angelman today november - december edition 2013

SPECIAL HOLIDAY EDITION

The History Of

What is a MAPS Dr

Celebrate the Holidays with Less Stress

Holiday gift

guide

digital magazine

The Holiday Season is upon us

lsquoTis the season for giving thanks and celebrating with friends and

family Time for office parties dinner parties and time to take-

out- the- good- dishes parties

I will began by thanking everyone who has helped create and

support Angelman Today Thanks to all of the readers that have

reached out and expressed your appreciation for having such a

wonderful new resource

I know that it is from the bottom of our hearts that we work so

hard to help bring the global community together and share our

experiences As parents we work on Angelman Today in between

caring for our Angels - which you know is a task-and-a- half - and

caring for our families andor working at other jobs The

Professionals of our medical and scientific advisory board

generously give of their limited time to write and send in articles

comments and quotes

I am so very grateful for the health of my family especially

Nathan who is doing amazingly well thanks to our MAPS

physicians I am thankful to every organization and community

member that has joined Angelman Today and shares the vision of

uniting a global community sharing resources information and

helping to improve the daily lives of individuals with Angelman

Syndrome everywhere I am truly amazed how quickly things are

happening and how Angelman Today is already reaching into

more than 40 countries and territories

I wish you all a very happy and healthy holiday season with close

friends and family and the friends that ARE family

Warm Wishes

Lizzie Sordia

Editor - in - Chief

EDITORrsquoS LETTER

Mosaicism in Angelman Syndromehellip6

By Dr Charles A Williams

The History of Angelman Syndromehellip7

Emergency Preparednesshelliphelliphelliphelliphellip9

Words of Wisdomhelliphelliphelliphelliphelliphelliphelliphellip13

What is a MAPS Dr

Interview with Dr David Bergerhelliphellip14

Christmas Gift Ideashelliphelliphelliphelliphelliphelliphellip17

Little Keeper Sleepershelliphelliphelliphelliphelliphellip19

LGIT (Low Glycemic Index Treatment)

Sweet Treat for the Holiday Season

by Sybille Kraft Bellamyhelliphelliphelliphelliphellip21

Managing Holiday Stresshelliphelliphelliphelliphellip24

by Eileen Braun

A Fatherrsquos View ndash By Peter Krafthelliphellip32

Angels in Action ndash Francoisehelliphelliphellip38

Clinical Trial for Seizures in

Children Using Cannabishelliphelliphelliphelliphellip39

Whatrsquos inside

Angelman and Associated

Foundations

Syndrome Angelman France hellip4

Casa Angelman Argentinahelliphelliphellip8

Angelman Syndrome Belgiumhellip12

THERAsurfhelliphelliphelliphelliphelliphelliphelliphelliphellip16

The Angelman Syndrome

Foundationhelliphelliphelliphelliphelliphelliphelliphelliphellip22

Angelman Syndrome

Association Spainhelliphelliphelliphelliphelliphellip28

The Angelman Network ndash New

Zealandhelliphelliphelliphelliphelliphelliphelliphelliphelliphellip31

Israeli Angelman Syndrome


The Charlie Foundationhelliphelliphellip35

FASThelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip40

Cannabidiol (CBD)

clinical trial to begin 21 19

7 6

39

17

Cover

Nathan Sordia

5 yrs old AS

Syndrome Angelman France is an association created

nationally for those families and friends of people who have

the care of SAF The administration of SAF is composed of

families as well as professionals from the medical

paramedical and medico-social world The functioning of

SAF is totally assured by voluntary workers

What does the SAF Association propose

- Enchance the expertise of parents in organizing and

facilitating the dissemination of information and sharing

experiences This is why a website magazine has been

created and managed ( wwwsyndromeangelman-franceorg

) This site is interactive collaborative and has a regular

and consistent link with families spread over the five

continents

- Be a resource center for families having someone with this

disability in society

- Deepen reflection on their own disability of mental

handicap and thus contribute to others a view on this

difference

- Publicize the Angelman syndrome

- Encourage and help the research by informing and

sensibilizing medical paramedical social and medico-

social groups on traditional and innovative educational

methods adapted to the Angelman syndrome

- Cooperate by exchanges with other regional and national

associations who have the same values and objectives

Two SAF actions

- Inventory of individuals with Angelman syndrome

- Find the results of our investigation on the website

httpwww syndromeangelman-franceorgwp-

contentuploadsSurvey-Angelman-Adult-2013-Francepdf

Syndrome Angelman France wwwsyndromeangelman-franceorg

wwwfacebookcomSyndromeAngelmanFrance

A BOOK TO READ ldquoAngelman Syndrome - A look on

a rare neurogenetic diseaserdquo

This book is published by Editions

H prefaced by Professor DAN and

written by Anne Castle Anne is the

mother of a young adult Angelman

and Vice-president of the

Syndrome Angelman France

association

Collection Sciences et Socieacuteteacute ndash

Editions LrsquoHarmattan

BUY TODAY WITH THIS LINK

A lire Le SA Regard sur une

maladie neurogeacuteneacutetique rare un

livre publieacute aux eacuteditions H preacutefaceacute

par le Pr DAN et eacutecrit par Anne

Chacircteau maman drsquoun jeune adulte

A et Vice-preacutesidente de

lrsquoassociation SAF

helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip

Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2013 Angelman Today LLC All rights reserved worldwide

Thank You

A Big Thanks to all of the contributors that help

bring you Angelman Today

All of the Angelman

and Associated

Foundations

across the globe

Dr Charles Williams of University of Florida

Dr Elizabeth Thiele of Mass General

Dr David Berger of Wholistic Pediatrics

Contributors

Angelman Today Supporters

Sleep Safe Beds - wwwsleepsafebedcom

Little Keepers Sleepers ndash

wwwlittlekeepersleeperscom

MediPal ndash wwwmedipalcom

Sybille Kraft Bellamy

Peter Kraft

Charles De Broin

Eileen Braun

Anne Chateau

Karray Shwartz Cox

In the last edition I reviewed

the four genetic mechanisms

that can disrupt the Angelman

syndrome (AS) gene

chromosome deletion

imprinting defect mutation in

UBE3A and paternal

uniparental disomy When an

individual with AS has one of

these defects it is typically

present in every cell of the

body since the defect existed at

the time of conception when the

sperm and egg fused to form

the first cell of the embryo All

of the subsequent cells are thus

derived from this original cell

It is possible in rare situations

however for the AS defect to

occur after the first cell

divisions of the embryo such

that there is a normal and an

abnormal cell line the general

term for this phenomenon is

cell mosaicism

Mosaicism in an individual

with AS means that a few cells

in their body (and also in their

brain) are normal These

normal cells coexist with all of

the other cells that have the AS

defect Mosaicism in AS most

often occurs in imprinting

defects that do not involve

deletions of the imprinting

center (the great majority of

those with imprinting defects

are of this non-deletion type)

About 10 to 30 of individuals

with the non-deletion type may

have a small percent of their

cells that are normal

without the typical 15q112-q13

deletion For example 80 of the

cells in the blood may have the

typical AS deletion while 20 of

the cells are normal The same can

theoretically occur for those with

AS due to uniparental disomy To

my knowledge mosaicism for

UBE3A mutation identified by

blood study in an individual with

AS has not been reported but that

is also theoretically possible

In a mother who has an AS child

with a UBE3A mutation

mosaicism involving UBE3A has

been detected in her in what is

termed germline mosaicism

Here the mothers blood cells are

normal but apparently in her

ovaries there are egg (eg germ)

cells that have the UBE3A

mutation This situation is

presumed to be present for

example when the mother gives

birth to two subsequent children

with AS each having the same

UBE3A mutation but studies of

the mothers blood are completely

normal The diagram illustrates

this type of germline mosaicism

(blue cells are the normal cells) and

contrasts it to the other type of

mosaicism that is discussed above

termed ldquoconstitutionalrdquo meaning

that cells throughout the body are

involved

Understanding mosaicism in AS

can be complicated especially

when considering the possibility of

germline mosaicism in mothers

since this rare condition can lead to

recurrence of AS among siblings

We detect evidence of this by the

DNA methylation test that is

performed on blood When the test

suggests mosaicism we presume

(but do not really know) that cells

in the brain also have a similar

percentage of normal cells In

instances of imprinting mosaicism

the percent of normal cells is

usually less than 20 Individuals

with AS who are imprinting-type

mosaics can have relatively higher

developmental ability Some have

been noted to speak words and

even to put words together more

than is seen in the typical child

with AS who is non-mosaic They

may also have better motor ability

(eg almost normal walking) and

relatively higher cognitive skills

The three other mechanisms that

cause AS are much less likely to

have mosaicism but a few rare

instances have been reported

Chromosome studies (either

molecular or FISH-type) may

identify a small percent of cells


Dr Harry Angelman

1915 ndash 1996

Dr Harry Angelman was an English physician

who identified what is now known as Angelman

Syndrome

Dr Angelman was born in Birkenhead England

He was an enthusiast for the language and

country of Italy

He first observed three children who were

unrelated but showed similar symptoms of

severe intellectual delay stiff jerky gait lack of

speech seizures motor disorders and happy

demeanors

Then while vacationing in Italy he observed an

oil painting calledhellip A Boy with a Puppet by the

renaissance artist Giovanni Francesco Caroto at

the Castelvecchio museum in Verona

Reminded of the children Dr Angelman

published a paper in 1965 that described what

he called ldquopuppet childrenrdquo At this time his

paper was not immediately recognized as

important

It wasnrsquot until 1982 when Charles A Williams

and Jaime L Frias of the department of

Pediatrics Division of Genetics University of

Florida College of Medicine Gainesville

submitted a paper to the American Journal of

Medical Genetics reporting studies of six

patients and comparing their data to those from

previous reports - severe developmental delay

ldquopuppet-likerdquo gait craniofacial abnormalities

and frequent episodes of laughter that it became

clear the syndrome was more common than

previously thought They proposed the name of

this disorder be changed to Angelman

Syndrome

The History of Angelman Syndrome

How to Gather Emergency Supplies

When Hurricane Sandy hit the East coat in

2012 we lost electric power for 5 days and

were under a curfew for a week with limited

access to our regular food sources of supply

My son Max celebrated his 11 birthday with

candles a lot of candles Candles were the

main source of light in our kitchen We have a

generator and we used it most of the day to

recharge our laptop phone and fridge and to

keep our furnace going

We had known for days that our area would be

on the stormrsquos path We were not particularly

concerned by the flooding because we are

located on a hill but we knew we might lose

power and we did

It made me realize how quickly life can

change and disaster can strike Sandy did not

affect us too much Max was safe in our house

and I had enough food stored for him Still I

became aware of how unprepared I was to

cope with the needs of a child like Max if

things had been worse What if we had had to

evacuate Would I have had time to pack

everything I needed for him his rescue

medication his food his clothes and diapers

In the middle of a crisis would I have

remembered everything I needed to take

along

I decided I had to learn what it would take

for me to be prepared Here is what I have

discovered and would like to share with

you

Our angels are extremely sensitive to stress

a new situation new environment and a

new routine can be challenging If we had

to evacuate for any reason it would be

quick with no warning and most likely in a

panic mode

As a result Max would be exposed to a

different environment to noise and light in

a shelter and to new people Most likely he

would also become sleep deprived and I

would not be able to prepare his usual

meals and follow his special diet All theses

factors can trigger seizures as we know

Most of the time when a hurricane or a

snowstorm hits you will receive a warning

But if an unpredictable natural or man-

made disaster strikes you will have no time

to plan and you will have to leave

Every situation is different and each child

may have different and very specific needs

but here is a list of basic things you will

need and a list of websites where you can

get information to help you be better

prepared

Emergency preparedness for children with

specials needs following a therapeutic diet By Sybille Kraft Bellamy

Disaster Supplies Kit

A disaster supplies kit is a collection of basic items that could be needed in the event of a

disaster For our children with special needs we need very specific things

It is recommended to have the following

bull Medical alert tags or bracelets that identify the medical condition ie name of the

syndrome epilepsy allergies glucose dextrose intolerancehellip

bull A two-week medication supply ready for an eventual evacuation A prescription with the

patientrsquos name and his regular medication is also recommended

bull A portable bottle if your child is on O2

bull Copy of personal documents (list of medication list and any pertinent information)

bull Your child special cupbottle

bull Water one gallon per day 3-day supply 2-week supply for home

bull Non-perishable food 3-day supply for evacuation 2-week supply for home

bull Cans of coconut milkunsweetened condensed milkwhipping cream

bull Peanut butternuts buttercoconut oil

bull Individual electrolytes bagsbaby formulaketocal

bull Cans of tuna sardineslentilsbeans

bull Emergency sleeping bags

bull Emergency blanket

bull Can opener forkspoonmultipurpose tool

bull Flash light

bull DiaperwipesClorox wipes

bull Extra clothes

bull Charger for iPodsiPhone

For more information please visit

CDC Emergency Risk Communication Branch (ERCB)

Division of Emergency Operations (DEO)

Office of Public Heath Preparedness and Response (OPHPR)

The American Red Cross Get a survival kit

ldquo Are you ready An in-depth guide to citizen preparedness(Publication NoIS-22) (2004

August) Basic preparation pages 13-46

FEMA Are you ready Recovering from Disaster

FDA Registered 866-852-2337

Wersquore here to help

SleepSafe IIreg - Medium Bedwith Padding and IV Accessories

SleepSafereg - Low Bed

SleepSaferreg- High Bedoers the most safety protection with two removable safety rails

SleepSafereg Beds is domestic USA manufacturer of adaptable safety beds featuring removable safety side rails designed to virtually eliminate entrapment and falls for those with special needs The SleepSafereg bed line includes SleepSafereg SleepSafereg II and SleepSaferreg models each oering more safety rail to mattress height

SleepSafeBedcom

SleepSafe IIreg - Medium Bed in Multi-Color

SleepSaferreg- High Bedwith one safety rail removedand one safety rail rotated down

SleepSafe IIreg - Medium Bed in White

SleepSafereg Beds are built to each order oering twin or full size xed articulating or HiLo frames padding and a range of nishes SleepSafereg Beds

help those with special needs get a safe restful sleep ndash and smiles on the faces of their

caregivers who see their loved ones getting the sleep they deserve

History

Angelman Syndrome Belgium is an association

which was founded in 2011 by some parents who

have a child with the Angelman Syndrome

Aims

Our main goal is to reach the Belgium families

that have a child with the Angelman Syndrome

so we can share practical information support

each other and share as well up to date scientific

information

Activities

Yearly we organize a couple of events during

which we aim to provide a nice relaxing day for

the families Also brothers sisters and grandpa-

rents of the Angelman child are very welcome to

join on these days Our organization tries as

well to raise awareness of the angelman syndro-

me to physicians and caregivers Also scientific

research is supported by our association

FOLLOW US ON

Parents Organisation

A N G E L M A N S Y N D RO M E B E L G I U M

httpstwittercomangelmanSB httpswwwfacebookcomAngelmansyndroom wwwangelmansyndroombe Postangelmansyndroombe

Dads and Dudes with Angels By Charles De Broin from Montreal Quebec

Do we dads have it easy you say

That romantic night turns into a nine month wait for a

little miracle of life

Mom suddenly takes over and knows what to do

almost by instinct or is it the eighteen girlfriends and

her mom that make it all dizzily work

No sleep no more calm evenings to watch the game

on tv but all this is so much fun

They grow so fast and suddenly you realize

something is wrong

Mother panics dad comforts her to no avail

Doctors spin to find what it is that makes an otherwise

healthy baby not progress as the growth curve

indicates

ldquoGive it a while children grow at varying ratesrdquo the

good doctor says

Unsatisfied mom turns to every avenue and is told

that a genetic test might pinpoint the culprit that is

making our baby so different than her sister Helenrsquos

baby

The test is done and Angelman Syndrome is defined

as the source of our babyrsquos problem

The questions beginhellip ldquoWill he talk will he walk that

dream of him being a lawyer is still alive isnrsquot it will he

be able to play baseball or soccerrdquo Mom is

more rationalhellip ldquoIt doesnrsquot matter I will love him no

matter what just make those damned seizure stop

doctor pleaserdquo

The fear give way to advocacy mom is a spoke-person

for equal rights of the disabled in the school the

community and rattles parent teacher groups for

change in a system cold and oblivious to the less

fortunate Dad starts a foundation for latter years and

reluctantly accepts the defeat of not having the

brightest and strongest boy on the block

Before either of them know it their son is over 30 and

both mom and dad realize that the dream of having a

child in their lives forever has come true

He now lives in a group home but visits regularly at

home and yes mom and dad have a tag team

arrangement when their son still wakes up at 300

am ready to start his day They still visit the farm to

see his favorite horse and in the summer visit their little

country place where he can stare into a campfire and

giggle as mom and dad sing campfire song like when

he was a child

And this summerrsquos holiday spent with mom and dad

both tired and sleep deprived after a few short nights

Both looking at each other and speaking of enjoying

that unconditional lovehellip that hug at bed-time that

speaks so much of thanks and recognition

Words Of

Wisdom

Words Of Wisdom Parent Shared Experience

WHAT IS A MAPS DOCTOR

AND WHY SHOULD I HAVE ONE MAPS ndash Medical Academy of Pediatric Special Needs

Interview with Dr David Berger Wholistic Pediatrics and MAPS Physician

The Medical Academy of Pediatric Special Needs

is a group of professionals who offer a

Comprehensive Education and Fellowship to

Medical Professionals for the care of children

with Autism Spectrum Disorders and related

Chronic Complex Conditions Their mission is to

prepare medical professionals to deliver the best

possible care to children with ASD and other

special needs conditions Under the guidance of

Daniel Rossignol MD FAAFP this uniquely

designed scientific evidence-based course of

study is designed by clinicians for clinicians

MAPS Physicians are at the forefront of helping

families by thoroughly assessing and treating the

chronic conditions based on science and the needs

of each individual that can positively affect ones

quality of life

I recently had the privilege of catching up with

one of the busiest lecturing physicians of MAPS

Dr David Berger MD FAAP Dr David is a

board-certified pediatrician who specializes in

holistic pediatric primary care nutritional and

detoxification therapies

How can this approach help individuals with

Angelman Syndrome

Dr David ndash ldquoThe approach is an individualized

approach It is about Biochemistry and looking

into the body and treating the body as a whole

(The reason he named his practice Wholistic

Pediatrics and Family Care

wwwwholisticfamilycarecom) We are also

documenting that individuals with Down

Syndrome (also a genetic condition) are also

improving with Biomedical treatments so we

know that established genetics conditions can

benefit from theses treatmentsrdquo

helliphelliphelliphelliphelliphellip

helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip

Dr David (as he is referred to by his patients) is

no stranger to Angelman Syndrome in fact he

has worked with Dr Jaime L Frias (from the

Department of Pediatrics Division of Genetics

University of Florida College of Medicine co-

author of the 1982 paper in the American

Journal of Medical Genetics on Angelman

Syndrome) he is also my son Nathanrsquos

Pediatrician

ldquoThe individualized approach is simple

Biochemistry Physiology and Anatomy

Providing practical solutions of treatment The

time spent with each patient is very important

A five minute consultation cannot treat a

patient effectively A complete evaluation is

necessary to find and correct the underlying

abnormalitiesrdquo

Many of the chronic conditions that

individuals with Angelman syndrome can be

treated for are Nutritional deficiencies

metabolic deficiencies Mitochondria

dysfunction Methylation problems

inflammation Constipationdiarrhea illness

ear infections allergies sleep disorders

seizures and more The ability to truly get

individuals healthy is what I have found with

you and MAPS Doctors These are

treatments that can be done today

ldquoYes you have just described my overall career

and the chronic conditions we treat whether it is

individuals with Autism Down Syndrome or

Angelman Syndrome The path to healing is

like a marathon I explain to my patients it is

not a sprint It is a steady process much like

lifting up the hood of a car and checking the

engine We must look inside the individual and

evaluate the intestinal track food digestion

immune system vitaminmineral deficiency and

toxicity Some of these tests can be run by regular

labs but other tests require more specialized labs

Most mainstream doctors do not do these tests

Getting to the cause and correcting the problem is

the goal The individualized approach helps us do

that Treatments often include dietary changes

nutritional supplements and medications MAPS

will ensure that physicians meet a certain standard

so parents can be assured they are receiving

evidence-based information for their childrdquo

Dr Berger is a Board Certified

Pediatrician who specializes in

holistic primary care nutritional

and detoxification therapies for

autism ADHD and related

disorders and immune

dysregulation such as allergies asthma and

autoimmune disorders He sees children and adults

with these medical conditions

In addition Dr Berger works with women and men

who wish to do preconception and prenatal counseling

testing and treatments to try and optimize the health of

the pregnancy and baby

He graduated from The Medical College of

Pennsylvania in 1994 and did his Pediatric Residency

at the University of South Florida He started using

holistic therapies at the Tampa General HospitalUSF

Pediatric Clinic during his residency He has served as

the team doctor for Tampa Catholic High School the

Medical Director for a summer camp run by the Tampa

AIDS Network and the Medical Liaison for the Palm

Beach County Breast Feeding Task Force He has been

in private practice since 1997 and in 2005 he opened

Wholistic Pediatrics in Tampa Florida Dr Berger has

been an advanced practitioner of biomedical therapies

advocating the Autism Research Institute philosophy

since 1999 In 2010 Dr Berger was appointed the

position of Assistant Professor at the University of

South Florida College of Nursing and in 2011 he

became Vice President of the Medical Academy of

Pediatric Special Needs

Wholistic Pediatrics and Family Care

3341 W Bearss Avenue

Tampa FL 33618

Tel 813-960-3415

Email infowholisticpedscom

Website wwwwholisticfamilycarecom

MAPS ndash Medical Academy of


wwwmedmapsorg

Locate a MAPS Practitioner at wwwmedmapsorgclinician-directory

Parents seek out MAPS professionals

becausehellip

They know their child is being well cared for

by well versed and educated medical

professionals at the top in their field

MAPS Trained Medical Professionals have

undergone intensive CME coursework based

on scientific research to address and treat the

medical issues related to Autism and other

related disorders

MAPS welcomes MD DO ND PA NP RN amp LPN

Refer your medical professionals to a MAPS

Clinicianrsquos Training Course

For more information

The Medical Academy

of Pediatric Special Needs

16251 Laguna Canyon Rd Ste 175

Irvine CA 92618

Toll Free 8554474200

Tel 3072131400

Fax 3072131401

Email inquirymedmapsorg

THERAsurf is an amazing organization My son Finn thoroughly enjoyed his surf experience - he spent the

entire time grinning and giggling with utter joy But the real gift of THERAsurf is much more important than one wonderful day - watching from the beach as one of the surfers paddles out into the ocean with your child and then catches a wave is the most awe-inspiring and emotional experience imaginable With each wave barriers and limitations given by doctors are smashed and you are left with the realization that given proper support the opportunities and possibilities for your child are endless Thank you THERAsurf for a life-changing experienceldquo --Tina Thompson

We help children and their families access the stoke of surf culture and aspire to create a can-do

environment in a world full of limitations

wwwtherasurforg

Epilepsy Awareness

November is Epilepsy Awareness Month

Did you know

-1 in 10 people in the US have had a seizure

-The majority of individuals with Angelman Syndrome have Epilepsy

For more info visit

wwwepilepsyfoundationorg

The Most

Gift Guide

-Two Winners will receive 2 Sleepers of their choice

-Two Winners will receive 2 Zip Bibs

Enter online at wwwangelmantodaycategorycontests

Finger paint

gift - set

Water Table

Discovery digital camera

Apple iPad

Safety First Trampoline

Wooden Bead Maze

Nabi

Weehoo iGo Bicycle trailer

Click images

amp shop

Amazon

ldquoOh no this canrsquot

be happeningrdquo was the thought than ran through

our minds when our triplets were

toddlers and going through a phase

of taking off their sleepers and

diapers With another daughter

only twenty-two months older a

dog and a busy household we did

not want to be spending our days

changing sheets and cleaning

messes Instead we tried to find a

solution to keeping our children

clothed at naptime and throughout

the night We found no solutions

that we thought were safe and

practical and that was how the idea

of the Little Keeper Sleepers was

born

Some parents refer to the Little

Keeper Sleepers as ldquosanity

saversrdquo ldquolife saversrdquo and ldquothe

reason they can sleep againrdquo

We just know they help people

and wersquore happy to be a part of

that

After many design changes we

finally concluded that we needed

the features of a non-stretchable

neck and two snap closure

systems one that covers the zipper

and one that completely prevents

the zipper from being pulled down

by the child This makes removal

extremely difficult for children

yet easy for caregivers to get on

and off We chose a 100 soft

interlock cotton that would be

comfortable and a neutral color

that could be worn by both boys

and girls

As we started selling on-line

customers started asking us for

larger sizes They would tell us

their stories about how their

children with Autism Angelman

Syndrome Aspergerrsquos and other

special needs also did the behavior

of ldquobrown partiesrdquo and lots of

other interesting ways of

describing it We truly listen to our

customer feedback

Parents were desperate for something

to keep their childrsquos sleepers on at

night We discovered that these

sleepers were incredibly helpful to

parents who have children with

special needs As a result we have

expanded from the single version of

the Little Keeper Sleeper with long

sleevelong pants to now include

sleepers with short sleeves sleepers

with footies three different color

choices and sizes up to 1112 which

will fit a child over five feet tall Our

business not only has expanded with

the sleepers but we also created a bib

that toddlers cannot take off using the

same concept as the sleepers The Zip

Bibs feature a cute bear are unisex

and are primarily for babies amp

toddlers

Although we only sell the sleepers amp

bibs via our website at this time they

have been shipped to almost every

continent (come on Antarctica) Sleep

consultants as well as hospitals have

contacted us to use these with their

patients We have been involved in

blog giveaways and fundraisers

including the FAST Gala for

Angelman Syndrome

What we love the most is hearing from

many of our customers after they have

had the sleepers for a

while Comments such as ldquoItrsquos the

ONLY sleeper my grandson cannot

get out of THANK YOU for making

our lives a little easierrdquo ldquoWhat a

wonderful blessing your sleepers have

been They are soft amp comfortable

and my daughter keeps them on all

night and we are all getting a good

nightrsquos restrdquo The reduction in the

amount of laundry has been a nice

bonus toordquo

To Save 5 on your order

enter code LKSAT wwwlittlekeepersleepercom

Products We Like

Recipe

- frac14 cup grated apple - I use the cheese grater

- Mix with one egg and one tsp of hazelnut flour

- Make two small cakes and fry in coconut oil for about 5

minutes

- Prepare whipped cream with a drop of stevia

- Layer the cream between the apple cakes and decorated

with a 1tbs of blueberries amp Enjoy

LGIT Apple Surprise Sweet Treat for the Holiday Season

By Sybille Kraft Bellamy

thank you for your support this yearOur Incredible Supporters

The time energy and immense support that hundreds of individuals have committed to the Angelman syndrome community through the Angelman Syndrome Foundation reached impeccable heights during this past year Fundraising and awareness-raising efforts introduced the Angelman syndrome community to thousands of new supporters thanks to the dedication and efforts of volunteers donors and AS families across the country The Angelman Syndrome Foundation is deeply grateful for the efforts of each and every volunteer donor and supporter and would like to publicly recognize and thank a few very special individuals for their tremendous investment of time and support

All Walkers Volunteers and Supporters ASF National WalkThe 11700 individuals who attended the 2013 National Walk and raised more than $1 million made the Angelman Syndrome Foundationrsquos recent $125 million investment in Angelman syndrome research possible Those participating in the 29 National Walk sites across the country worked tirelessly to fundraise in their communities and it is making a true impact within the Angelman syndrome community THANK YOU to everyone who participated and made the 2013 National Walk a tremendous success

Danny Fisher Kick for a CureThe 2013 football season brought a whole new level of meaning to the Bloomsburg University Huskies and the Angelman syndrome community Inspired by family friend Brianna Rehm who has Angelman syndrome Danny Fishermdasha record-breaking kicker for the Huskiesmdashlaunched the Kick for a Cure campaign where he encouraged his fans and community to support the Angelman Syndrome Foundation Supporters were asked to use Dannyrsquos jersey number 97 as inspiration to make a one-time $97 donation or $970 for each field goal kicked this season To date Danny has raised more than $3500mdashfar exceeding his original fundraising goalmdashin support of Angelman syndrome research

The Olsenrsquos Tractor Cruise and Sports CampsFor the past nine years the Olsen FamilymdashKeith Denise and their childrenmdashhas hosted an annual Tractor Cruise fundraiser in support of individuals with Angelman syndrome The 2013 Tractor Cruise was their most successful yet More than 50 tractors attended with one supporter traveling more than 160 miles (one way) to participate The tractors proceeded along the cruise route raising awareness about Angelman syndrome throughout the entire Horton Kansas community and then ended at the Olsenrsquos for a good lsquool fashioned party The Olsenrsquos also hosted summer sports camps to raise additional funds resulting in a grand total of more than $6000 from supporters

wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg

thank you for your support this year

The Rossettirsquos and Granatarsquos Windy City ThunderboltsSue and Jeff Rossetti and Dawn and Rich Granata and their families hosted a minor league baseball game in Tinley Park Illinois featuring tailgating raffles and fun activities for folks of all ages in July 2013 A high-energy and creative event it raised nearly $6000 for Angelman syndrome research and brought in even more grassroots support for the Angelman syndrome community

Mary Wagstaff and Susan Ravellette Get Frenchy with Gail SimmonsMary Wagstaff an ASF Board member and sister to the late Dr Joseph Wagstaff one of the Angelman syndrome

communityrsquos most revered clinicians and researchers hosted a fundraising event in partnership with ASF Board member Susan Ravellette in Los Angeles to raise funds for the Angelman Syndrome Foundationrsquos Joseph E Wagstaff Postdoctoral Fellowship The Fellowship awards funds to a young budding researcher who is pursuing Angelman syndrome research as a career Celebrity chefs and large donors from the greater Los Angeles area attended the event which featured French-themed cuisine and decor The event was a tremendous success raising more than $28000 and helps support continued funding for the Wagstaff

Fellowship and future Angelman syndrome research

Sarah Delmotte 5K for a CureIn September Angelman Syndrome Foundation supportermdashand sister to an individual with Angelman syndromemdashSarah Delmotte hosted a 5k in Newark Delaware to raise funds and awareness for Angelman syndrome The 5k raised $1500 in donations for the Angelman Syndrome Foundation and raised awareness throughout the greater Newark area We are incredible grateful for Sarahrsquos tenacity enthusiasm and efforts in organizing this event

Penny Jusko Madonna JamPenny Juskorsquos daughter Madonna is diagnosed with Angelman syndrome and this is the second year that Penny has hosted the Madonna Jam benefit concert in Cincinnati Ohio Featuring performers covering a range of genres the concert was attended by hundreds of supporters from the greater Cincinnati area raising more than $2750 in support of individuals with Angelman syndrome and Fragile X Syndrome Many thanks to Penny and everyone involved with Madonna Jam for advancing the Angelman syndrome community through your efforts

Angelique Tuthill Elks Lodge FundraiserAngelique Tuthill whose son has Angelman syndrome hosted an event in Middletown NY at Elks Lodge 1097 She and supporters from the Elks Lodge raised more than $4500 in support of individuals with Angelman syndrome and greatly expanded awareness of Angelman syndrome in the Middletown community

Rand

all M

iche

lson

Pho

togr

aphy

Itrsquos not just about getting through

and surviving the holidays we all

want to truly enjoy our time with

family and friends How do we

balance all that we think we need

or want to do and still enjoy the

holidays We hope these holiday

tips will help to keep you a little

more relaxed and less stressed

this holiday season

Have a plan and set realistic

expectations

Decide what is important to you

and your immediate family The

ldquoHallmarkrdquo holiday we see on TV

in reality most likely does not exist

Be selective and choose those

invitations that are most important

and special to you and your family

Perhaps celebrating the actual

holiday with just your immediate

family is just the ticket to keep the

special holiday more manageable

and less stressful and other family

and friend events can be attended

outside of the immediate holiday

Try keeping the guest list to a

manageable minimum so the day

doesnrsquot become overwhelming for

everyone Try a few small

gatherings on different days rather

than one large overwhelming

gathering

You know your childrsquos stressors

triggers and anxiety points so

remember to be a good observer

and head things off before they

get to the point of no return

Donrsquot be reluctant to be the last

ones to show up (just call ahead if

you are running really late) and it is

fine to be the first ones to say

thanks for the eggnog and

goodbye if that will help make

your visit more enjoyable

Watch for subtle escalating

non-verbal cues your child is

communicating to you and others

that she is becoming anxious

andor overwhelmed Intervene

with a break or calm quiet

private relaxation time and ask

your individual when she is

ready to join the gathering again

and honor herhis request

Donrsquot forget your routine

Our children typically do best

with structure and routine

Cookies and milk may well be a

part of the holiday season but

eating well getting enough rest

and sticking to routines will help

everyone in your family enjoy

the holidays Donrsquot let these

routines get away from you

completely as they will be

harder to re-establish once the

holiday season is done

Itrsquos OK to take a break

If you are hosting people at your

home and your child is feeling

overwhelmed or is in need of

some time alone make sure she

has a safe place for some quiet

down time When you are

visiting friends and family talk

with the hosts and identify a

quiet space where your child and

you can ldquoescaperdquo when she is

feeling overwhelmed or in need

of some quiet or alone time Also

be sure to ask about any house

rules (like no food in the

bedrooms) that will make the

visit less stressful for all

Clothes dont make the child

If your child is sensitive to

certain types of clothes or just

stubbornly insists on wearing

something you (or you suspect

someone else) will find

inappropriate dont pick a battle

with all of the other potential

stressors during the holiday

season While eyebrows may

raise if your child isnrsquot dressed to

the nines the goal is to start your

child out with as low a stress

level as possible Fussing over

clothes or putting her or him in

clothes that you know will cause

anxiety is a tough way to start

Augment the menu

Whether youre bringing a little

something to someone elses

gathering or planning the

gathering in your own home

make sure there are a variety of

items your child will enjoy

eating especially if your child is

on a special diet such as the

LGIT The goal of the day isnt

cleaning your plate or trying new

foods or pleasing the cook Its

making sure your child is well-

nourished sticking to herhis

diet and more importantly its

about giving thanks for the good

things in our lives

Tips for Managing Holiday Stress

By Eileen Braun Executive Director of the Angelman Syndrome

Foundation and mother to a young lady with Angelman syndrome

Remain calm

Memorize this phrase and repeat it

over and over in your head

whenever you feel yourself losing

your cool I do not have to

apologize for being a good parent to

my child We may struggle under

the weight of advice or

disapproval from family members

but our kids dont care about that

They need what they need You

know best what your child needs

and providing it is your most

important responsibility no

arguments Since most children with

special needs react poorly to stress

in their environment particularly

stressed-out parents staying relaxed

and low-key is one of the best things

you can do to keep your childs

behavior in line You can always

throw a tantrum when you get

home

No martyrs here

Donrsquot be afraid to ask for help or

ask for a breakmdasheven if it is for 15

minutes or a couple of hours Ask a

friend or relative who understands

and is familiar with your child to

keep an eye out and engage her or

him regularly If you can line up a

few people to take turns nobody

will miss too much socializing time

Itrsquos not about things being perfect it

is about time well-spent with those

we care about and love

Give plenty of praise

If your child is doing a great job

handling party stress give her or

him lots of positive reinforcement

Compliments high-fives and hugs

go a long way toward keeping good

behavior coming A happy child

makes for a happy party and thats a

pretty good goal

What to do about gifts

If you are like many families you

have a house full of toys from

relatives that your child has no

interest in playing So how do we

get our families to purchase gifts our

children are sure to enjoy Point

your family in the right direction by

creating a list of items and email it to

your relatives along with the link to the

store and the product number Make it

as easy as possible to purchase the

item Look at toy catalogs from the

perspective of your childrsquos strengths

and challenges What toys seem

visually stimulating What toys have a

hands-on tactile look to them What

games promote word recall What

games include player interaction What

games help foster conversation

As our children get older the challenge

is that the things that once interested

them no longer domdashand that is a good

thing because they are growing and

maturing and developing new skills

and interests Remember too that it is

not the quantity or equality of the gifts

but finding those gifts that are most

meaningful to our children with

Angelman syndrome Perhaps a special

holiday pillow comfy blanket special

cuddly sweatshirt or item that your

individual can identify with will have

particular significance and meaning for

her and will quickly become a favorite

treasured gift that reminds her of this

special holiday

Gift Giving Time

Any one or more of these scenarios

may describe your child with

Angelman syndrome Here are a few

helpful hints if

~Your child is unable to open presents

Relatives love the excitement of seeing

the youngsters open their presents but

your child is unable to do so Earlier in

the day before the melee of gift giving

starts you might ask each relative to

spend time with your child and open

the present for him

This will be more meaningful for

both your child and relative

~Your child is uninterested in

opening presents

Even if you open the presents for

your child he doesnrsquot acknowledge

that they are there What do you do

Open the presents at home Your

family might be disappointed but

tell them that he is so interested in

everything else that he just canrsquot

focus on the presents Tell them that

he will enjoy opening and playing

with his gifts in the quiet of his

home

~Your child is interested in

unwrapping presents but not the

gift

For your child itrsquos all about ripping

the wrapping paper He doesnrsquot

even pay attention to the toy Take

note of who gave which present

On a later day when your child

plays with his toy take a picture to

send to the relative to say thanks

Another suggestion is to ask some

relatives ahead of time if your child

can help open their presents Your

child can look forward to Grandma

inviting him to open the presents for

her

~Your child focuses on one present

Your child has a mound of presents

but stops after opening the second

present Let him open his presents

at his own speed You might end up

taking half of the gifts home with

the wrapping still on them and

thatrsquos okay Let him open the rest

the next day

~Your child is overwhelmed at

everyone opening presents

Your child may be overwhelmed by

the chaos of everyone talking at

once and tearing the wrapping

paper off their presents If this

sounds like your child itrsquos okay to

go to another room and watch a

holiday TV show while the rest of

the family opens presents Another

suggestion is earlier in the day have


Sharing the PSA with your networksmdashand asking

your friends family neighbors and colleagues to

share the message with their networksmdashis essential

to this campaign With your help in spreading the

word we can ensure a more timely diagnosis for our

loved ones with Angelman syndrome You can share

the PSA from the ASFrsquos Facebook page or website

Your Support Makes Our Work PossibleIt is because of your support that the Angelman Syndrome Foundation is able to invest millions in promising research and provide essential support services for individuals with Angelman syndrome and their families The end of the year is the perfect time to show your support and invest in Angelman syndrome research and family support services by making a tax-deductible donation to the Angelman Syndrome Foundation THANK YOU for your ongoing support of the Angelman syndrome community and stay tuned for more information about how you can support Angelman syndrome families and research

Calendar of Angels The 2014 Calendar of Angels will soon be available for purchase Share the spirit of love this season by giving your friends family and loved ones the Calendar of Angels as a gift The calendar features individuals with Angelman syndrome and proceeds from calendar purchases directly benefit the Angelman Syndrome Foundation Order yours today

Combatting MisdiagnosisDue to the Angelman syndrome communityrsquos support and that of several media partners the Angelman Syndrome Foundation launched a public service campaign aimed at reducing the rate of misdiagnosis of individuals with Angelman syndrome Nearly 50 percent of individuals with Angelman syndrome were originally misdiagnosed with an incorrect disorder prior to obtaining the proper diagnosis of Angelman syndrome This is unacceptable so the Angelman Syndrome Foundation created a campaign to raise awareness of Angelman syndrome and its symptoms among the general population specifically parents through development of 30-second and 60-second public service announcements (PSA) Thanks to the support of Time Warner Cable and numerous independent television stations across the country the PSA is airing nationally and in large media markets that span the country

The Angelman Syndrome Foundation is incredibly appreciative of the families who participated in the making of the PSA and of the Angelman syndrome community for supporting the PSA

2013Calendar

ofANGELS


continuedhellip

your child at her leisure present

each relative with a gift Your

relative may also decide to give

her present to your child at this

time Now your child can give

and receive a gift in a relaxed

atmosphere In a half hour go to

another relative and do the same

Special Tips for

Travelling Families

Medications and Medical

Records

Gather your childrsquos medications

and a copy of his or her medical

records Make sure you have

enough refills for the length of

trip and a few days extra in case

of inclement weather

Medical Equipment

If you are traveling with medical

equipment such as a wheelchair

or oxygen make sure to visit the

TSArsquos web pages on medical

devices and Assistive Devices

and Mobility Aids These pages

will be very helpful in guiding

you through security at your

local airport Call your departing

and arriving airport to find out

what guidelines they may have

Upon arrival some of your

checked medical equipment may

be offloaded at a special baggage

claim

You may also need to contact

your airline (by phone or web) to

find out how they handle medical

devices that are carried on board

or checked in

In Case of Emergency

In case of emergency make sure

you find a doctor at your

destination that will be able to

provide temporary care Ask your

pediatrician for a referral Safety ndash

Wandering Individual

If your child is a wanderer

consider a temporary tattoo

httpwwwtattooswithapurposec

om or purchasing a child tracking

device before you travel

httpwwwlok8ucom In case

your child becomes lost it is

helpful to have a recent photo and

a written description of

your childrsquos special needs (Will

she respond to her name Will he

run away from strangers)

Before You Head to the Airport

Call the TSA

The TSA has a helpline for

individuals with special needs

Call TSA Cares Travelers may

call 1-855-787-2227 prior to

traveling with questions about

screening policies procedures

and what to expect at the security

checkpoint When a passenger

with a disability or medical

condition calls TSA Cares a

representative will provide

assistance either with

information about screening that

is relevant to the passengerrsquos

specific disability or medical

condition or the passenger may

be referred to disability experts

at TSA TSA recommends that

passengers call approximately

72 hours ahead of travel so that

TSA Cares has the opportunity

to coordinate checkpoint

support with a TSA Customer

Service Manager located at the

airport when necessary

Small Bills

Whether itrsquos the taxi airport

shuttle driver or the skycap

make sure to get all the help

you can Bring plenty of small

bills to tip anyone who is

helping you out

Check-In at Home

Donrsquot wait in another line at the

airport Print your boarding

pass at home or check-in via

your smart phone Save

yourself the hassle

Have a backup plan

Weather mechanical issues

missed connections or late

arriving flights can wreak

havoc on your carefully laid

plans Make sure you make

plans for a one hour delay

multiple hour delay or a

complete cancellation Have a

social story ready that will

visually tell your child about

the delay and what may happen

next

Take a deep breath and smile

You have spent time planning

and preparing The day is

finally here Take a deep breath

smile and enjoy this special

time with your family

Tel 670 90 90 07infoangelman-asaorgwwwangelman-asaorg

The Angelman Syndrome Association (ASA) is a

non-profit organisation founded in Barcelona in

October 1996 on the initiative of a group of

concerned parents with children affected with this

syndrome

Our association is comprised of an approximate

number of 200 affected families dotted around the

country

Our association was formed for the purpose of

enhancing communication among the families

FAMILY MEETINGS

Every year we celebrate the family annual meeting to

be held in the different autonomous communities In

2013 this meeting was held in Torrejoacuten de Ardoz

(Madrid) During these encounters we organise

leisure and fun activiites for the children as well as

professional conferences on education medical social

or legal issues

This way awareness is raised by sharing opinions and

experiences among parents and keeping in contact

with caregivers and medical professionals in the

Angelman Syndrome

providing support counselling and information and

fostering research for a deeper knowledge at all levels

on the AS that will allow affected individuals to attain a

better quality of life Mainly concentrated on the

purpose of supporting the families of affected

individuals particularly those newly diagnosed we

have a supporting family network around the country

who voluntarily provide support and advice to parents

who require guidance and information

Moreover we keep in contact with other international

Angelman Syndrome Associations to foster the

exchange and sharing of information as well as

collaboration in all the different fields

This year we have hosted

Dr Weeber and also Dr Mayor

Main events 2012 and 2013

MAIN ACTIVITIES

An intense activity has been carried out by ASA during the last year thanks to the great commitment

of its members Different events have been organised with the aim of raising awareness and funds

for research We have equally participated in a large number of events or activities organised by

other associations and institutions where we helped setting the tables for the merchandise selling in

order to raise funds

RAISED FUNDS ALLOCATION

The purpose of all our activities is raising awareness of the

Angelman Syndrome and raising funds for the actual

management of the association as well as to foster

research

This way the funds raised from the old mobile collection

are monthly sent to the FAST in order to finance Dr

Edwin Weeberrsquos research Part of the assets were

allocated to contribute to a clinical trial with minocycline

which is likely to be initiated soon in a spanish hospital

ASA would collaborate with that hospital in case it

required a money contribution or with the member

families who would take part in the trial

There are also a certain amount of funds being allocated

to a research that is being carried out in Spain by Dr Ugo

Mayor in the CIC Biogune Center

PROFESSIONAL CONGRESSES

In 2012 a university congress was organised

inValladolid on the Angelman Syndrome We are

aiming to host another professional congress in

early 2014 This encounter seeks to advance the

awareness of Angelman Syndrome among those

professionals who take care of our children

(physiotherapists speech therapists psychomotor

specialists special education teachers etc) to help

them with how to deal with the management of

children affected with this syndrome

Our main fund raising campaigns

1- Old mobile phone collection for recycling them for trade

That was a very successful initiative in which over 68000 mobile

phones were collected in a yearrsquos time

2- Handmade product selling produced by the mothers mem-

bers of the association such as bracelets necklaces earrings and

other jewlery but also biscuits and different items

3- Awareness rubber wristband selling

Moreover a large number of other events have been carried out

during the last year (bazaars sport events charity events and

festivals etc) especially the Padel Tournament held in February

on the occasion of the International Angelman Syndrome Day

where the raised funds were enterely donated to the FAST

(Foundation for Angelman Syndrome Therapeutics)

We were warmly wel-

comed and by the end of

the weekend we felt well

connected Indeed it be-

came clear that we could

achieve much more by

working closer together as

an Australasian AS team

We are so grateful to Liz

Stanley Anne Funke and

the wonderful ASA organiz-

ing Committee for provid-

ing this wonderful net-

working opportunity for

our NZ families

The global picture where to nowhellip The Angelman Network is

seeking to actively expand

on the initiatives which the

recent international con-

ferences have generated

We aim to

1 Identify NZ scientists

medical professionals and

organizations that are

interested in Angelman

Syndrome

2 Form a NZ AS Network

via phone calls emails

and face-to-face meetings

3 Connect this group to

international individuals

orgs amp institutes who

share similar goals for AS

4 Continue strengthening

the International AS

Collective so that we can

lsquobuild faster tracksrsquo (as per

FAST AU) ie collaborate

globally share information

and resources quicker

fundraise harder and

initiate more research

world wide

5 Focus on achieving

these short term goals by

the next International

Angelman DaymdashFeb 15th

2014

We invite you to follow our

progress on our website

wwwangelmannetworkcom

Special points of interest

Kiwis in Sydney

Connecting Families

Specialists amp Researchers

The Global Picture

Where to nowhellip


Kiwis in Sydney

Above TAN Cultural Advisors Keith

Henderson Sivao amp Johno Winther

with Ursula and Nadine

Above Liz and Anne cut the ASA

20th Anniversary cake

Below Ursula meets Maria (70yrs)

Prof Dan Prof Weeber Mary-Louise and Meagan Cross (Chair FAST AU)

In early October seven

families and two pediatric

specialists from New Zealand

arrived in Sydney Australia

(only a 3 hours flight from

Auckland) to attend the

International Angelman Syn-

drome Conference This

event also celebrated the

20th anniversary of the ASA

organization and of the es-

tablishment of the Angelman

Clinic in Sydney There was

clearly a lot to celebrate

Three trustees from The

Angelman Network (TAN)

Trust attended Ursula Cran-

mer (Chair) Nadine Hender-

son (Secretary) and Gemma

Bradburn both the latter with

new babies on their hips Our

Cultural Advisors Sivao and

Johno Winthers and Keith

Henderson as well as addi-

tional families from across

NZ were also present

The weekend proved to be a

first class event and presen-

tations by Prof Ed Weeber

Prof Bernard Dan Dr Robert

Leitner Mary-Louise Bertram

and Meagan Cross were

highlights for our NZ families

as was meeting Maria an

angel who just turned 70

Kiwi-mums meet-up

The Hendersons Ed Weeber and Kevin Kennedy

TAN trustees Gemma Ursula and

Nadine with Mary Louise Bertram

Greetings Angleman

community and all

the readers of

ldquoAngelman Todayrdquo I

would like to thank

Liz Sordia for

stepping out and

showing leadership

by creating this

periodical to bring us

all closer and help us

find ways to meet

our challenges that

will maximize our

Anglesrsquo potential and

the opportunity to

share with you the

experience of the

moment I and my

wife learned that Max

had Angelman

syndrome

I am a Dad of a 12yr old Angel

named Maxent Max has two

brothers Charle age thirteen and

Tristan age eight

It is a day I am sure all parents and

families remember like yesterday

a mark of a journey that is

remarkable

Maxent was born November 5

2001 He was due the second week

of December but he decided he did

not want to wait that long Our

family was in the midst of quite a

bit of chaos as the events of

September 11 had just disrupted

our lives I work in the financial

markets and my office was 1 block

from the World Trade Center I

was displaced from my job as a

result of the horrible events of that

day

Our family is very blessed that

this is all that occurred to us and

our prayers are with the many

friends and associates and victims

we lost May peace always be with

them and their loved ones

My two partners and I were lucky

enough to find an opportunity but

it required us to relocate to Irvine

California

In the meantime my wife

Sybille and 16 month old son

Charle moved to My Motherrsquos

house in Delaware We figured I

would get a feel if the company

was a good fit for the family and if

it was we would move everyone

out after Sybille gave birth in

December

Two weeks later Max made his

big debut As a result of his

impatience (6 weeks premature)

Max needed additional care and

was rushed from the birthing room

to a neonatal unit (12miles away

accompanied by a police

motorcade) Eleven days later on

the way home from buying

groceries with my Mother driving

Sybille and the boys were rear-

ended Max had his second ride in

an ambulance to the ER and was

released with ldquono apparentrdquo

injuries

Meanwhile things in Irvine were

going well and I was hunting for

an apartment to call home Sybille

and the boys arrived the first week

of December Five days later Max

was in the ER diagnosed with

pneumonia and needed to be

admitted as he required oxygen to

keep his saturation level normal

Maxrsquos pneumonia slowly cleared

up but his saturation level

remained low requiring him to

remain on oxygen

He was tested for a plethora of

diseases and conditions but

nothing appeared A lung x-ray

revealed his right lung was

partially collapsed His hospital

stay lasted approximately 3

weeks He returned home where

he required 24hr oxygen until his

saturation level returned to normal

In the following weeks regular

follow ups with the lung specialist

and an ultrasound test reveled

Maxrsquos right diaphragm (muscle at

the base of the lung that fills and

dispels the lung with air) partially

paralyzed The recommendation

was to stay the course and hope

the diaphragm proved strong

enough to perform its duty as Max

developed

After five months and little

change Max needed surgery on his

lung called a diaphragm plication

which now keeps his lung

permanently open and close to full

capacity On the downside the

diaphragm does not function

properly As a result Max

struggled with any small cold or

infection quickly turning into

pneumonia making him a regular

at the ER over the next year We

traded our oxygen tanks for a

nebulizer and became breathing

treatment specialists

Time marched on we returned

back to NJ Max was growing well

as we managed his breathing

issues but Sybille noticed he was

missing some basic milestones

We spent the next few months in

and out of specialistsrsquo offices and

were receiving a similar response

ldquoMax is doing as well as you

could expect given all he has been

through it is not abnormal for him

to have some delaysrdquo One of the

last neurologists we saw suggested

we get a genetic test which had

also been suggested earlier by our

pediatrician This is when things

changed with our Doctorsrsquo visits We

had become very accustomed to

having trouble scheduling

appointments with specialists as well

as having long waiting room visits

only to feel rushed when we spoke to a

Doctor who assured us everything was

fine

The visit with the genetic ldquoteamrdquo

was very different For starters when

we arrived they offered us a cup of

coffee (Sybille told me after the

appointment she knew immediately

we were in for it) When we were

invited into the office it was a large

room with a big table where three

people were seated not including the

Doctor who escorted us in Thatrsquos

when I recall muttering ldquouh-ohrdquo under

my breath as the hairs on my neck

stood straight up

Introductions were made while we

braced ourselves for what we were

about to learn ldquoMr and Mrs Kraft

we have the results of Maxentrsquos

genetic test and have found we have

an explanation as to why he has been

running into some developmental

delayshelliphellipMaxrsquos results reveals he is

missing a part of gene 15 which we

know to be the genetic disorder called

Angelman Syndromehelliprdquo Freeze

frame

Silence hit my brain despite seeing

and watching more information being

presented to us through the moving

lips of the other specialists Shock

fear denial all rushed into me

simultaneously as the jumbled

murmurs of medical terminology

rolled out of their mouths like fire

balls torching from a fire breathing

dragon

When I finally heard English ldquodo

you have any questionshelliprdquo Thatrsquos

when my most amazing wife without

hesitation started belting out questions

that doused the flames from the evil

dragons to bring some order back

into my panicked mind

ldquoDoes he have a normal life

expectancy Is it a degenerative

disorder Will he need surgery

What kind of therapy will he need

How do we get itrdquo

She immediately grounded me and

brought sense into the shocking

news we just were presented

The genetic counselor in a

soothing voice asked me ldquoMr

Kraft I know this is a lot to take in

what are you feelinghelliprdquo I thought

for a second and was completely

blank I fumbled out something

like ldquoI donrsquot know yet you just

told me my child is handicappedrdquo

In hind sight I should have pointed

to my wife and saidhellipASK her

SHErsquoS IN CHARGErdquo It was

shocking news to say the least Itrsquos

a day Irsquom sure we all remember

well but I will never say it was a

bad one because our Angels are an

amazing gift

Sybille came home and charged

to the internet and got to work

while I broke the news to my

family I remember clearly the

awesome welcomes Sybille found

from our fellow Angleman parents

on the internet practically

congratulating us Bracing us for

the road of eye gouging hair

pulling pinching and slobbering we

were on our way to travel

Itrsquos not an easy road we travel but

it sure is fun We have learned

some much taking care of Max All

the Angels out there are an amazing

force of love and goodness We are

all blessed to have them We as

parents have to keep up the good

fight to keep them safe and on their

road to reach their maximum

potential Thanks to Angelman

Today we can share our

experiences and tricks that will

keep us on that road

The Israeli Angelman Syndrome Foundation was established in

2012 with the aim of consolidating the efforts carried out in Israel

to improve the lives of people with AS by promoting early

diagnosis research treatment and training The foundation is

designed to provide services to all Israeli children with AS and

their families

We seek to advance the awareness understanding and treatment

of AS with the ultimate goal of finding a cure We offer

consultancy and mental support for AS families We hold social

gatherings for AS families in holidays and weekends with the hope

of giving these families support and hope To this end we feel it is

important to cooperate with AS organizations around the globe

share databases and information and actively participate in

research and trials

The Israeli AS clinic operates within the Pediatric Neurology

institute of the Sheba Medical Center in the city of Tel-Aviv

Children with AS are treated by a dedicated team of physicians

including a psychiatrist and a nutritionist led by a pediatric

neurologist The clinic applies a multidisciplinary approach to

address the main clinical issues of AS including seizure and

movement disorders speech difficulties sleep disorders

hyperactivity and attention disorders in addition to other

behavioral and Orthopedic concerns The Sheba AS clinic aims to

conduct a dedicated research and clinical trials on AS and to

collaborate with AS centers worldwid

Over the last year we have held two scientific symposiums with

various presenters in the areas of neurology speech therapy and

psychology as well as lawyers specializing in social security

procedures

Happy Holidays from

Angelman Today

Angels in Action Celebrating the Abilities of our Angels

(In French and English)

Franccedilois a 24 ans et est UPD nous avons eu le

diagnostic quand il avait 13 ans Jusque lagrave il

avait veacutecu presque comme sil neacutetait pas

handicapeacute malgreacute un eacutecart de plus en plus grand

avec les autres enfants Il a marcheacute agrave 25 mois

mais le langage nest pas venu Sinon il eacutetait

facile et sinteacutegrait dans les groupes sans poser

de problegraveme Cest pourquoi jai tenteacute beaucoup

dapprentissages avec lui dautant plus queacutetant

professeur je ne concevais pas que mon enfant

nait pas droit agrave lrsquoeacuteducation

Il a eu un trotteur avant de marcher puis un

tricycle agrave deux ans A deux ans et demi il savait

peacutedaler Chaque anneacutee en vacances je lui ai

apporteacute un veacutelo dabord avec des petites roues

puis un eacuteteacute nous sommes partis avec deux

veacutelos lun avec des petites roues pour quil

puisse en faire librement dans le jardin et un

sans petites roues pour commencer agrave apprendre

Et tous les jours je lui faisais faire dix minutes

de veacutelo sur la route autour du village Je tenais

le guidon et la selle pour quil ne tombe pas et je

courais en mecircme temps qursquoil avanccedilait Jai bien

transpireacute Mais au bout de deux semaines jai

commenceacute agrave le lacirccher et il sest mis agrave en faire

tout seul Ceacutetait gagneacute

Franccedilois is 24 years old and UPD We got the

diagnosis when he was 13 years old We treated

him as if he wasnrsquot handicapped despite of the

increasingly great differences with other

Tous les eacuteteacutes avec son oncle et moi-mecircme nous

lavons emmeneacute faire des petites promenades de

plus en plus longues En hiver je lrsquoamenais

presque tous les dimanche matins faire du veacutelo au

bois de Vincennes pregraves de chez nous Parfois il ne

refusait drsquoavancer ou il sarrecirctait brusquement et

celui qui eacutetait derriegravere manquait de tomber ou il

prenait tout agrave coup un chemin ou il faisait demi-

tour brusquement

Bref Lapprentissage fut long On lui a appris agrave

freiner agrave srsquoarrecircter au stop agrave rester bien agrave droite

(cest cella plus dur encore mais il y arrive de

mieux en mieux) Maintenant il adore faire du

VTT mais aime aussi faire de la route restant bien

sur le cocircteacute quand une voiture arrive Bien sucircr on

est vigilant et on lavertit agrave lavance des

croisements des arrecircts des voitures qui arrivent

Il peut faire des promenades de plusieurs heures

sans fatigue Au deacutebut il jouait avec le deacuterailleur

et on lrsquoavait bloqueacute Depuis 2 ans il ne le fait

plus On lui regravegle le deacuterailleur pour qursquoil ne puisse

pas aller trop vite quand mecircme

Moi jrsquoai du mal agrave suivre mais heureusement son

oncle peut encore mais bientocirct lrsquoeacutelegraveve va deacutepasser

ses maicirctres

children He walked alone at 25 months but the

language did not come

Otherwise he was calm and became integrated

easily into groups without causing behaviour

problems

I worked hard to educate him especially

because I was a teacher I could not imagine

that my child would not be educated He had a

trotter before walking then a

tricycle when he was 2 When he was 2 and a

half he was able to used pedals

Each year on holidays I gave him a bicycle

first with training wheels and later we went to

two wheels He had one bike with training

wheels so he can freely ride in the garden and

one without training wheels to start learning

And everyday I made him practice ten minutes

on the road around the village I held the

handlebars and saddle it so it did not fall and I

ran I was soaked in sweat But after two

weeks I stopped little by little holding the

bicycle and he got to do it alone The bet was

won betweem his uncle and I Each summer

holiday we go for rides more and more

In winter with me he bikes on Bois de

Vincennes near our home Sometimes he does not

want to continue or he will stop suddenly and

turn to see if anyone was behind him

In short learning was long He was taught

braking stopping remaining on the right side of

the road (it is the hardest but he gets better and

better )

Now he loves all terrain bikes but also he enjoys

the road remaining on the correct side of the road

when a car arrives Although we are vigilant and

warn him in advance of the crossings stops signs

and when cars arrive He can ride several hours

without fatigue In the beginning he played with

the derailing and we had to block it Now for 2

years he does not play with it any longer We

settle (adjust) the derailing so that he cannot go

too fast I have difficulty in following him now

but fortunately his uncle still can but soon the

pupil is going to exceed (overtake) his teachers

Clinical Trial Begins on a New Treatment Using

Cannabis for Intractable Seizures in Children

CANNABIDIOL (CBD) the non-

psychoactive compound of cannabis

For more info about this study go to

httpwwwgwpharmcomPhase1Epilepsyaspx

There is a study underway to test the safety and

efficacy of Cannabidiol (CBD) the non-

psychoactive compound of cannabis Some of the

experts involved are the Angelman communitiesrsquo

very own specialists Dr Elizabeth A Thiele and Dr

Ronald Thibert of Massachusetts General Hospital

Both Physicians are members of the Scientific

Advisory Committee of the Angelman Syndrome

Foundation

The study will provide a better understanding of the

maximally tolerated dose and potential side effects

of CBD as well as display its efficacy in two well-

defined childhood epilepsy syndromes Dravet and

Lennox-Gastaut which are very difficult to control

even with medication

Angelman Today will be following this study closely

and will keep you informed

The Foundation for Angelman

Syndrome Therapeutics

Presents the 2013 FAST Global

Summit on Angelman Syndrome A Weekend-Long Event Including an

Educational Seminar Scientific

Symposium Fundraising Gala and more

FAST Global Summit on Angelman Syndrome

The Foundation for Angelman Syndrome Therapeutics (FAST) is pleased to announce that the 2nd Annual

Global Summit on Angelman Syndrome will take place on Friday and Saturday December 6-7 2013 at

the Hyatt Regency Chicago You will not want to miss this years excitement as we have more free

seminars more guest speakers and even more celebrity attendees

The Annual FAST Gala will take place Friday evening 600 PM to Midnight in the Regency Ballroom of the

Hyatt Regency Chicago Guest speakers this year include Dr Edwin Weeber and Dr Rebecca Burdine Guest

of Honor is Golden Globe winning actor and fellow parentColin Farrell Additional celebrity attendees will

be announced in the coming months Entertainment will be provided by 7th Heaven Band Additional

entertainment will be announced in the coming months

There will be two seminars on Saturday afternoon December 7th 2013 one on challenging behaviors in

Angelman Syndrome and one on sleep strategies for children with Angelman Syndrome Dr Chris Oliver

world expert on challenging behaviors in Angelman Syndrome will host the seminar on behaviors and Dr

Keith Allen Professor of Psychology and Pediatrics will host the sleep seminar both will have a parent

QampA session immediately following To view videos of the Educational Seminar and Scientific Round Table

hosted at the 2012 FAST Global Summit on Angelman Syndrome please visit the FAST YouTube page

A Scientific Round Table panel will be held on Saturday December 7th 2013 Speakers include renowned

Angelman Syndrome experts Dr Edwin Weeber Dr Scott Dindot and Dr David Segal Additional speakers

will be announced in the coming months The Scientific Round Table discussion will be the most

comprehensive and up-to-date overview of the current landscape of Angelman research Immediately

following the informative discussion the scientists will answer any questions from audience members in a

QampA session

Important facts to know about the 2013 FAST Global Summit on Angelman Syndrome

Date

Friday - Saturday December 6-7 2013

Location

Hyatt Regency Chicago 151 E Wacker Dr Chicago IL 60601

Events

Friday night - Annual FAST Gala

Saturday afternoon - 2 educational Angelman-specific seminars

Saturday afternoon - Scientific Round Table

Sponsorship

To purchase corporate sponsorship please click here

Program Advertisement

To purchase program advertisement please click here

Program Announcement

To purchase an announcement for family or a friend please click here

Silent Auction Donation

To download the silent auction donation form please click here

Costs

Admission to all seminars will be free to the Angelman community

Tickets to the Gala are $15000 per person Tables of ten (10) and twelve (12) are available for

purchase FAST is releasing a limited supply of tickets at this time You may purchase tickets by

clicking here

The FAST room rate at the Hyatt Regency Chicago is $10900 per night plus tax This rate is

available from 12032013 to 12092013 This rate is only valid if you book before November

15 2013 You may book your room by clicking here

Rules amp Restrictions

Absolutely NO children under the age of 21 will be permitted to attend the Gala or enter the Gala

venue

Children are permitted and welcome to attend the seminars

Tickets and table purchases are non-refundable

Colin Farrell Ticket Giveaway

The Colin Farrell Ticket Giveaway will be announced this September Every Angelman family will be

eligible to enter the drawing for a chance to receive either one or two complimentary tickets to the Gala

The ticket giveaway will be announced via email and on the FAST Facebook page There are a very

limited amount of tickets in this drawing so please note that entry in the drawing does not guarantee you

will receive tickets

Guaranteed Complimentary Tickets and Lodging

The Summit is so much fun and so educational that we often forget its main purpose is to raise funds for

research We encourage all of you to secure Corporate Sponsorship Program Advertisement or Program

Announcements from your employer local businesses friends and families for this very exciting event

Individuals who secure either a $100000 Corporate Sponsorship or $100000 in Program Advertisement

andor Announcements will receive two complimentary tickets to the Gala Individuals who secure a

$500000 sponsorship will receive two complimentary tickets plus a two-night stay at the Hyatt Regency

Chicago Click here for sponsorship forms Click here for a Program Advertisement and Announcement

Form

The Gala will be a sold-out event We are not able to live-stream the Gala on the web this year FAST

intends to live-stream and videotape the seminars but this is contingent upon Summit sponsorship If you

want to ensure your attendance at the event please purchase your tickets now or win them by securing

Corporate Sponsorships If you have any questions about the FAST Global Summit on Angelman

Syndrome please send an email to infoCureAngelmanorg

Thank you for your support

Please Share Angelman Today

wwwangelmantodaycom

Connect with us on

The Holiday Season is upon us

lsquoTis the season for giving thanks and celebrating with friends and

family Time for office parties dinner parties and time to take-

out- the- good- dishes parties

I will began by thanking everyone who has helped create and

support Angelman Today Thanks to all of the readers that have

reached out and expressed your appreciation for having such a

wonderful new resource

I know that it is from the bottom of our hearts that we work so

hard to help bring the global community together and share our

experiences As parents we work on Angelman Today in between

caring for our Angels - which you know is a task-and-a- half - and

caring for our families andor working at other jobs The

Professionals of our medical and scientific advisory board

generously give of their limited time to write and send in articles

comments and quotes

I am so very grateful for the health of my family especially

Nathan who is doing amazingly well thanks to our MAPS

physicians I am thankful to every organization and community

member that has joined Angelman Today and shares the vision of

uniting a global community sharing resources information and

helping to improve the daily lives of individuals with Angelman

Syndrome everywhere I am truly amazed how quickly things are

happening and how Angelman Today is already reaching into

more than 40 countries and territories

I wish you all a very happy and healthy holiday season with close

friends and family and the friends that ARE family

Warm Wishes

Lizzie Sordia

Editor - in - Chief

EDITORrsquoS LETTER






What is a MAPS Dr








by Eileen Braun





Whatrsquos inside


Foundations







Angelman Syndrome








Cannabidiol (CBD)


7 6

39

17

Cover

Nathan Sordia

5 yrs old AS














continents





difference








Two SAF actions















association













Thank You



All of the Angelman

and Associated

Foundations

across the globe




Contributors







Peter Kraft

Charles De Broin

Eileen Braun

Anne Chateau

Karray Shwartz Cox




syndrome (AS) gene

chromosome deletion


UBE3A and paternal


















cell mosaicism





















































involved



































Dr Harry Angelman

1915 ndash 1996



Syndrome



country of Italy





demeanors









important














Syndrome

















power and we did













along




you






panic mode


















prepared























bull Flash light


bull Extra clothes
















SleepSafeBedcom







History




Aims





information

Activities









FOLLOW US ON














something is wrong




indicates


good doctor says




baby








doctor pleaserdquo


















he was a child






Words Of

Wisdom





















quality of life








Angelman Syndrome






















Pediatrician








abnormalitiesrdquo

































































Tampa FL 33618

Tel 813-960-3415





wwwmedmapsorg



becausehellip








related disorders





The Medical Academy



Irvine CA 92618


Tel 3072131400

Fax 3072131401






wwwtherasurforg

Epilepsy Awareness


Did you know



For more info visit


The Most

Gift Guide




Finger paint

gift - set

Water Table


Apple iPad


Wooden Bead Maze

Nabi


Click images

amp shop

Amazon


















born







that















and girls











customer feedback




















toddlers










Angelman Syndrome














bonus toordquo



Products We Like

Recipe




minutes




















Rand

all M

iche

lson

Pho

togr

aphy










this holiday season


expectations





















gathering






































































Augment the menu
















things in our lives




Remain calm






















home

No martyrs here





















pretty good goal





































special holiday

Gift Giving Time




helpful hints if








the present for him




opening presents











home



gift













her









the next day
























2013Calendar

ofANGELS


continuedhellip









Special Tips for

Travelling Families


Records







Medical Equipment















claim





or checked in





















Call the TSA




call 1-855-787-2227 prior to






















Small Bills






helping you out

Check-In at Home





yourself the hassle

Have a backup plan












next












syndrome



country



FAMILY MEETINGS







or legal issues




Angelman Syndrome

















MAIN ACTIVITIES










research





































We were warmly wel-














our NZ families






We aim to





Syndrome

















world wide





2014





Kiwis in Sydney

Connecting Families


The Global Picture

Where to nowhellip


Kiwis in Sydney











































Kiwi-mums meet-up




Greetings Angleman

community and all

the readers of


would like to thank

Liz Sordia for

stepping out and

showing leadership

by creating this



find ways to meet

our challenges that

will maximize our


the opportunity to

share with you the

experience of the

moment I and my


had Angelman

syndrome




Tristan age eight




remarkable













day










California









December















injuries













remain on oxygen




















developed







































fine













stood straight up












frame










dragon































amazing gift






























their families








research and trials















procedures

Happy Holidays from

Angelman Today









































tour brusquement
















ses maicirctres





problems



























better )



























Foundation




































QampA session


Date


Location


Events




Sponsorship








Costs




clicking here






venue

















Form








wwwangelmantodaycom

Connect with us on






What is a MAPS Dr








by Eileen Braun





Whatrsquos inside


Foundations







Angelman Syndrome








Cannabidiol (CBD)


7 6

39

17

Cover

Nathan Sordia

5 yrs old AS














continents





difference








Two SAF actions















association













Thank You



All of the Angelman

and Associated

Foundations

across the globe




Contributors







Peter Kraft

Charles De Broin

Eileen Braun

Anne Chateau

Karray Shwartz Cox




syndrome (AS) gene

chromosome deletion


UBE3A and paternal


















cell mosaicism





















































involved



































Dr Harry Angelman

1915 ndash 1996



Syndrome



country of Italy





demeanors









important














Syndrome

















power and we did













along




you






panic mode


















prepared























bull Flash light


bull Extra clothes
















SleepSafeBedcom







History




Aims





information

Activities









FOLLOW US ON














something is wrong




indicates


good doctor says




baby








doctor pleaserdquo


















he was a child






Words Of

Wisdom





















quality of life








Angelman Syndrome






















Pediatrician








abnormalitiesrdquo

































































Tampa FL 33618

Tel 813-960-3415





wwwmedmapsorg



becausehellip








related disorders





The Medical Academy



Irvine CA 92618


Tel 3072131400

Fax 3072131401






wwwtherasurforg

Epilepsy Awareness


Did you know



For more info visit


The Most

Gift Guide




Finger paint

gift - set

Water Table


Apple iPad


Wooden Bead Maze

Nabi


Click images

amp shop

Amazon


















born







that















and girls











customer feedback




















toddlers










Angelman Syndrome














bonus toordquo



Products We Like

Recipe




minutes




















Rand

all M

iche

lson

Pho

togr

aphy










this holiday season


expectations





















gathering






































































Augment the menu
















things in our lives




Remain calm






















home

No martyrs here





















pretty good goal





































special holiday

Gift Giving Time




helpful hints if








the present for him




opening presents











home



gift













her









the next day
























2013Calendar

ofANGELS


continuedhellip









Special Tips for

Travelling Families


Records







Medical Equipment















claim





or checked in





















Call the TSA




call 1-855-787-2227 prior to






















Small Bills






helping you out

Check-In at Home





yourself the hassle

Have a backup plan












next












syndrome



country



FAMILY MEETINGS







or legal issues




Angelman Syndrome

















MAIN ACTIVITIES










research





































We were warmly wel-














our NZ families






We aim to





Syndrome

















world wide





2014





Kiwis in Sydney

Connecting Families


The Global Picture

Where to nowhellip


Kiwis in Sydney











































Kiwi-mums meet-up




Greetings Angleman

community and all

the readers of


would like to thank

Liz Sordia for

stepping out and

showing leadership

by creating this



find ways to meet

our challenges that

will maximize our


the opportunity to

share with you the

experience of the

moment I and my


had Angelman

syndrome




Tristan age eight




remarkable













day










California









December















injuries













remain on oxygen




















developed







































fine













stood straight up












frame










dragon































amazing gift






























their families








research and trials















procedures

Happy Holidays from

Angelman Today









































tour brusquement
















ses maicirctres





problems



























better )



























Foundation




































QampA session


Date


Location


Events




Sponsorship








Costs




clicking here






venue

















Form








wwwangelmantodaycom

Connect with us on














continents





difference








Two SAF actions















association













Thank You



All of the Angelman

and Associated

Foundations

across the globe




Contributors







Peter Kraft

Charles De Broin

Eileen Braun

Anne Chateau

Karray Shwartz Cox




syndrome (AS) gene

chromosome deletion


UBE3A and paternal


















cell mosaicism





















































involved



































Dr Harry Angelman

1915 ndash 1996



Syndrome



country of Italy





demeanors









important














Syndrome

















power and we did













along




you






panic mode


















prepared























bull Flash light


bull Extra clothes
















SleepSafeBedcom







History




Aims





information

Activities









FOLLOW US ON














something is wrong




indicates


good doctor says




baby








doctor pleaserdquo


















he was a child






Words Of

Wisdom





















quality of life








Angelman Syndrome






















Pediatrician








abnormalitiesrdquo

































































Tampa FL 33618

Tel 813-960-3415





wwwmedmapsorg



becausehellip








related disorders





The Medical Academy



Irvine CA 92618


Tel 3072131400

Fax 3072131401






wwwtherasurforg

Epilepsy Awareness


Did you know



For more info visit


The Most

Gift Guide




Finger paint

gift - set

Water Table


Apple iPad


Wooden Bead Maze

Nabi


Click images

amp shop

Amazon


















born







that















and girls











customer feedback




















toddlers










Angelman Syndrome














bonus toordquo



Products We Like

Recipe




minutes




















Rand

all M

iche

lson

Pho

togr

aphy










this holiday season


expectations





















gathering






































































Augment the menu
















things in our lives




Remain calm






















home

No martyrs here





















pretty good goal





































special holiday

Gift Giving Time




helpful hints if








the present for him




opening presents











home



gift













her









the next day
























2013Calendar

ofANGELS


continuedhellip









Special Tips for

Travelling Families


Records







Medical Equipment















claim





or checked in





















Call the TSA




call 1-855-787-2227 prior to






















Small Bills






helping you out

Check-In at Home





yourself the hassle

Have a backup plan












next












syndrome



country



FAMILY MEETINGS







or legal issues




Angelman Syndrome

















MAIN ACTIVITIES










research





































We were warmly wel-














our NZ families






We aim to





Syndrome

















world wide





2014





Kiwis in Sydney

Connecting Families


The Global Picture

Where to nowhellip


Kiwis in Sydney











































Kiwi-mums meet-up




Greetings Angleman

community and all

the readers of


would like to thank

Liz Sordia for

stepping out and

showing leadership

by creating this



find ways to meet

our challenges that

will maximize our


the opportunity to

share with you the

experience of the

moment I and my


had Angelman

syndrome




Tristan age eight




remarkable













day










California









December















injuries













remain on oxygen




















developed







































fine













stood straight up












frame










dragon































amazing gift






























their families








research and trials















procedures

Happy Holidays from

Angelman Today









































tour brusquement
















ses maicirctres





problems



























better )



























Foundation




































QampA session


Date


Location


Events




Sponsorship








Costs




clicking here






venue

















Form








wwwangelmantodaycom

Connect with us on


Thank You



All of the Angelman

and Associated

Foundations

across the globe




Contributors







Peter Kraft

Charles De Broin

Eileen Braun

Anne Chateau

Karray Shwartz Cox




syndrome (AS) gene

chromosome deletion


UBE3A and paternal


















cell mosaicism





















































involved



































Dr Harry Angelman

1915 ndash 1996



Syndrome



country of Italy





demeanors









important














Syndrome

















power and we did













along




you






panic mode


















prepared























bull Flash light


bull Extra clothes
















SleepSafeBedcom







History




Aims





information

Activities









FOLLOW US ON














something is wrong




indicates


good doctor says




baby








doctor pleaserdquo


















he was a child






Words Of

Wisdom





















quality of life








Angelman Syndrome






















Pediatrician








abnormalitiesrdquo

































































Tampa FL 33618

Tel 813-960-3415





wwwmedmapsorg



becausehellip








related disorders





The Medical Academy



Irvine CA 92618


Tel 3072131400

Fax 3072131401






wwwtherasurforg

Epilepsy Awareness


Did you know



For more info visit


The Most

Gift Guide




Finger paint

gift - set

Water Table


Apple iPad


Wooden Bead Maze

Nabi


Click images

amp shop

Amazon


















born







that















and girls











customer feedback




















toddlers










Angelman Syndrome














bonus toordquo



Products We Like

Recipe




minutes




















Rand

all M

iche

lson

Pho

togr

aphy










this holiday season


expectations





















gathering






































































Augment the menu
















things in our lives




Remain calm






















home

No martyrs here





















pretty good goal





































special holiday

Gift Giving Time




helpful hints if








the present for him




opening presents











home



gift













her









the next day
























2013Calendar

ofANGELS


continuedhellip









Special Tips for

Travelling Families


Records







Medical Equipment















claim





or checked in





















Call the TSA




call 1-855-787-2227 prior to






















Small Bills






helping you out

Check-In at Home





yourself the hassle

Have a backup plan












next












syndrome



country



FAMILY MEETINGS







or legal issues




Angelman Syndrome

















MAIN ACTIVITIES










research





































We were warmly wel-














our NZ families






We aim to





Syndrome

















world wide





2014





Kiwis in Sydney

Connecting Families


The Global Picture

Where to nowhellip


Kiwis in Sydney











































Kiwi-mums meet-up




Greetings Angleman

community and all

the readers of


would like to thank

Liz Sordia for

stepping out and

showing leadership

by creating this



find ways to meet

our challenges that

will maximize our


the opportunity to

share with you the

experience of the

moment I and my


had Angelman

syndrome




Tristan age eight




remarkable













day










California









December















injuries













remain on oxygen




















developed







































fine













stood straight up












frame










dragon































amazing gift






























their families








research and trials















procedures

Happy Holidays from

Angelman Today









































tour brusquement
















ses maicirctres





problems



























better )



























Foundation




































QampA session


Date


Location


Events




Sponsorship








Costs




clicking here






venue

















Form








wwwangelmantodaycom

Connect with us on




syndrome (AS) gene

chromosome deletion


UBE3A and paternal


















cell mosaicism





















































involved



































Dr Harry Angelman

1915 ndash 1996



Syndrome



country of Italy





demeanors









important














Syndrome

















power and we did













along




you






panic mode


















prepared























bull Flash light


bull Extra clothes
















SleepSafeBedcom







History




Aims





information

Activities









FOLLOW US ON














something is wrong




indicates


good doctor says




baby








doctor pleaserdquo


















he was a child






Words Of

Wisdom





















quality of life








Angelman Syndrome






















Pediatrician








abnormalitiesrdquo

































































Tampa FL 33618

Tel 813-960-3415





wwwmedmapsorg



becausehellip








related disorders





The Medical Academy



Irvine CA 92618


Tel 3072131400

Fax 3072131401






wwwtherasurforg

Epilepsy Awareness


Did you know



For more info visit


The Most

Gift Guide




Finger paint

gift - set

Water Table


Apple iPad


Wooden Bead Maze

Nabi


Click images

amp shop

Amazon


















born







that















and girls











customer feedback




















toddlers










Angelman Syndrome














bonus toordquo



Products We Like

Recipe




minutes




















Rand

all M

iche

lson

Pho

togr

aphy










this holiday season


expectations





















gathering






































































Augment the menu
















things in our lives




Remain calm






















home

No martyrs here





















pretty good goal





































special holiday

Gift Giving Time




helpful hints if








the present for him




opening presents











home



gift













her









the next day
























2013Calendar

ofANGELS


continuedhellip









Special Tips for

Travelling Families


Records







Medical Equipment















claim





or checked in





















Call the TSA




call 1-855-787-2227 prior to






















Small Bills






helping you out

Check-In at Home





yourself the hassle

Have a backup plan












next












syndrome



country



FAMILY MEETINGS







or legal issues




Angelman Syndrome

















MAIN ACTIVITIES










research





































We were warmly wel-














our NZ families






We aim to





Syndrome

















world wide





2014





Kiwis in Sydney

Connecting Families


The Global Picture

Where to nowhellip


Kiwis in Sydney











































Kiwi-mums meet-up




Greetings Angleman

community and all

the readers of


would like to thank

Liz Sordia for

stepping out and

showing leadership

by creating this



find ways to meet

our challenges that

will maximize our


the opportunity to

share with you the

experience of the

moment I and my


had Angelman

syndrome




Tristan age eight




remarkable













day










California









December















injuries













remain on oxygen




















developed







































fine













stood straight up












frame










dragon































amazing gift






























their families








research and trials















procedures

Happy Holidays from

Angelman Today









































tour brusquement
















ses maicirctres





problems



























better )



























Foundation




































QampA session


Date


Location


Events




Sponsorship








Costs




clicking here






venue

















Form








wwwangelmantodaycom

Connect with us on

Dr Harry Angelman

1915 ndash 1996



Syndrome



country of Italy





demeanors









important














Syndrome

















power and we did













along




you






panic mode


















prepared























bull Flash light


bull Extra clothes
















SleepSafeBedcom







History




Aims





information

Activities









FOLLOW US ON














something is wrong




indicates


good doctor says




baby








doctor pleaserdquo


















he was a child






Words Of

Wisdom





















quality of life








Angelman Syndrome






















Pediatrician








abnormalitiesrdquo

































































Tampa FL 33618

Tel 813-960-3415





wwwmedmapsorg



becausehellip








related disorders





The Medical Academy



Irvine CA 92618


Tel 3072131400

Fax 3072131401






wwwtherasurforg

Epilepsy Awareness


Did you know



For more info visit


The Most

Gift Guide




Finger paint

gift - set

Water Table


Apple iPad


Wooden Bead Maze

Nabi


Click images

amp shop

Amazon


















born







that















and girls











customer feedback




















toddlers










Angelman Syndrome














bonus toordquo



Products We Like

Recipe




minutes




















Rand

all M

iche

lson

Pho

togr

aphy










this holiday season


expectations





















gathering






































































Augment the menu
















things in our lives




Remain calm






















home

No martyrs here





















pretty good goal





































special holiday

Gift Giving Time




helpful hints if








the present for him




opening presents











home



gift













her









the next day
























2013Calendar

ofANGELS


continuedhellip









Special Tips for

Travelling Families


Records







Medical Equipment















claim





or checked in





















Call the TSA




call 1-855-787-2227 prior to






















Small Bills






helping you out

Check-In at Home





yourself the hassle

Have a backup plan












next












syndrome



country



FAMILY MEETINGS







or legal issues




Angelman Syndrome

















MAIN ACTIVITIES










research





































We were warmly wel-














our NZ families






We aim to





Syndrome

















world wide





2014





Kiwis in Sydney

Connecting Families


The Global Picture

Where to nowhellip


Kiwis in Sydney











































Kiwi-mums meet-up




Greetings Angleman

community and all

the readers of


would like to thank

Liz Sordia for

stepping out and

showing leadership

by creating this



find ways to meet

our challenges that

will maximize our


the opportunity to

share with you the

experience of the

moment I and my


had Angelman

syndrome




Tristan age eight




remarkable













day










California









December















injuries













remain on oxygen




















developed







































fine













stood straight up












frame










dragon































amazing gift






























their families








research and trials















procedures

Happy Holidays from

Angelman Today









































tour brusquement
















ses maicirctres





problems



























better )



























Foundation




































QampA session


Date


Location


Events




Sponsorship








Costs




clicking here






venue

















Form








wwwangelmantodaycom

Connect with us on
















power and we did













along




you






panic mode


















prepared























bull Flash light


bull Extra clothes
















SleepSafeBedcom







History




Aims





information

Activities









FOLLOW US ON














something is wrong




indicates


good doctor says




baby








doctor pleaserdquo


















he was a child






Words Of

Wisdom





















quality of life








Angelman Syndrome






















Pediatrician








abnormalitiesrdquo

































































Tampa FL 33618

Tel 813-960-3415





wwwmedmapsorg



becausehellip








related disorders





The Medical Academy



Irvine CA 92618


Tel 3072131400

Fax 3072131401






wwwtherasurforg

Epilepsy Awareness


Did you know



For more info visit


The Most

Gift Guide




Finger paint

gift - set

Water Table


Apple iPad


Wooden Bead Maze

Nabi


Click images

amp shop

Amazon


















born







that















and girls











customer feedback




















toddlers










Angelman Syndrome














bonus toordquo



Products We Like

Recipe




minutes




















Rand

all M

iche

lson

Pho

togr

aphy










this holiday season


expectations





















gathering






































































Augment the menu
















things in our lives




Remain calm






















home

No martyrs here





















pretty good goal





































special holiday

Gift Giving Time




helpful hints if








the present for him




opening presents











home



gift













her









the next day
























2013Calendar

ofANGELS


continuedhellip









Special Tips for

Travelling Families


Records







Medical Equipment















claim





or checked in





















Call the TSA




call 1-855-787-2227 prior to






















Small Bills






helping you out

Check-In at Home





yourself the hassle

Have a backup plan












next












syndrome



country



FAMILY MEETINGS







or legal issues




Angelman Syndrome

















MAIN ACTIVITIES










research





































We were warmly wel-














our NZ families






We aim to





Syndrome

















world wide





2014





Kiwis in Sydney

Connecting Families


The Global Picture

Where to nowhellip


Kiwis in Sydney











































Kiwi-mums meet-up




Greetings Angleman

community and all

the readers of


would like to thank

Liz Sordia for

stepping out and

showing leadership

by creating this



find ways to meet

our challenges that

will maximize our


the opportunity to

share with you the

experience of the

moment I and my


had Angelman

syndrome




Tristan age eight




remarkable













day










California









December















injuries













remain on oxygen




















developed







































fine













stood straight up












frame










dragon































amazing gift






























their families








research and trials















procedures

Happy Holidays from

Angelman Today









































tour brusquement
















ses maicirctres





problems



























better )



























Foundation




































QampA session


Date


Location


Events




Sponsorship








Costs




clicking here






venue

















Form








wwwangelmantodaycom

Connect with us on





















bull Flash light


bull Extra clothes
















SleepSafeBedcom







History




Aims





information

Activities









FOLLOW US ON














something is wrong




indicates


good doctor says




baby








doctor pleaserdquo


















he was a child






Words Of

Wisdom





















quality of life








Angelman Syndrome






















Pediatrician








abnormalitiesrdquo

































































Tampa FL 33618

Tel 813-960-3415





wwwmedmapsorg



becausehellip








related disorders





The Medical Academy



Irvine CA 92618


Tel 3072131400

Fax 3072131401






wwwtherasurforg

Epilepsy Awareness


Did you know



For more info visit


The Most

Gift Guide




Finger paint

gift - set

Water Table


Apple iPad


Wooden Bead Maze

Nabi


Click images

amp shop

Amazon


















born







that















and girls











customer feedback




















toddlers










Angelman Syndrome














bonus toordquo



Products We Like

Recipe




minutes




















Rand

all M

iche

lson

Pho

togr

aphy










this holiday season


expectations





















gathering






































































Augment the menu
















things in our lives




Remain calm






















home

No martyrs here





















pretty good goal





































special holiday

Gift Giving Time




helpful hints if








the present for him




opening presents











home



gift













her









the next day
























2013Calendar

ofANGELS


continuedhellip









Special Tips for

Travelling Families


Records







Medical Equipment















claim





or checked in





















Call the TSA




call 1-855-787-2227 prior to






















Small Bills






helping you out

Check-In at Home





yourself the hassle

Have a backup plan












next












syndrome



country



FAMILY MEETINGS







or legal issues




Angelman Syndrome

















MAIN ACTIVITIES










research





































We were warmly wel-














our NZ families






We aim to





Syndrome

















world wide





2014





Kiwis in Sydney

Connecting Families


The Global Picture

Where to nowhellip


Kiwis in Sydney











































Kiwi-mums meet-up




Greetings Angleman

community and all

the readers of


would like to thank

Liz Sordia for

stepping out and

showing leadership

by creating this



find ways to meet

our challenges that

will maximize our


the opportunity to

share with you the

experience of the

moment I and my


had Angelman

syndrome




Tristan age eight




remarkable













day










California









December















injuries













remain on oxygen




















developed







































fine













stood straight up












frame










dragon































amazing gift






























their families








research and trials















procedures

Happy Holidays from

Angelman Today









































tour brusquement
















ses maicirctres





problems



























better )



























Foundation




































QampA session


Date


Location


Events




Sponsorship








Costs




clicking here






venue

















Form








wwwangelmantodaycom

Connect with us on







SleepSafeBedcom







History




Aims





information

Activities









FOLLOW US ON














something is wrong




indicates


good doctor says




baby








doctor pleaserdquo


















he was a child






Words Of

Wisdom





















quality of life








Angelman Syndrome






















Pediatrician








abnormalitiesrdquo

































































Tampa FL 33618

Tel 813-960-3415





wwwmedmapsorg



becausehellip








related disorders





The Medical Academy



Irvine CA 92618


Tel 3072131400

Fax 3072131401






wwwtherasurforg

Epilepsy Awareness


Did you know



For more info visit


The Most

Gift Guide




Finger paint

gift - set

Water Table


Apple iPad


Wooden Bead Maze

Nabi


Click images

amp shop

Amazon


















born







that















and girls











customer feedback




















toddlers










Angelman Syndrome














bonus toordquo



Products We Like

Recipe




minutes




















Rand

all M

iche

lson

Pho

togr

aphy










this holiday season


expectations





















gathering






































































Augment the menu
















things in our lives




Remain calm






















home

No martyrs here





















pretty good goal





































special holiday

Gift Giving Time




helpful hints if








the present for him




opening presents











home



gift













her









the next day
























2013Calendar

ofANGELS


continuedhellip









Special Tips for

Travelling Families


Records







Medical Equipment















claim





or checked in





















Call the TSA




call 1-855-787-2227 prior to






















Small Bills






helping you out

Check-In at Home





yourself the hassle

Have a backup plan












next












syndrome



country



FAMILY MEETINGS







or legal issues




Angelman Syndrome

















MAIN ACTIVITIES










research





































We were warmly wel-














our NZ families






We aim to





Syndrome

















world wide





2014





Kiwis in Sydney

Connecting Families


The Global Picture

Where to nowhellip


Kiwis in Sydney











































Kiwi-mums meet-up




Greetings Angleman

community and all

the readers of


would like to thank

Liz Sordia for

stepping out and

showing leadership

by creating this



find ways to meet

our challenges that

will maximize our


the opportunity to

share with you the

experience of the

moment I and my


had Angelman

syndrome




Tristan age eight




remarkable













day










California









December















injuries













remain on oxygen




















developed







































fine













stood straight up












frame










dragon































amazing gift






























their families








research and trials















procedures

Happy Holidays from

Angelman Today









































tour brusquement
















ses maicirctres





problems



























better )



























Foundation




































QampA session


Date


Location


Events




Sponsorship








Costs




clicking here






venue

















Form








wwwangelmantodaycom

Connect with us on

History




Aims





information

Activities









FOLLOW US ON














something is wrong




indicates


good doctor says




baby








doctor pleaserdquo


















he was a child






Words Of

Wisdom





















quality of life








Angelman Syndrome






















Pediatrician








abnormalitiesrdquo

































































Tampa FL 33618

Tel 813-960-3415





wwwmedmapsorg



becausehellip








related disorders





The Medical Academy



Irvine CA 92618


Tel 3072131400

Fax 3072131401






wwwtherasurforg

Epilepsy Awareness


Did you know



For more info visit


The Most

Gift Guide




Finger paint

gift - set

Water Table


Apple iPad


Wooden Bead Maze

Nabi


Click images

amp shop

Amazon


















born







that















and girls











customer feedback




















toddlers










Angelman Syndrome














bonus toordquo



Products We Like

Recipe




minutes




















Rand

all M

iche

lson

Pho

togr

aphy










this holiday season


expectations





















gathering






































































Augment the menu
















things in our lives




Remain calm






















home

No martyrs here





















pretty good goal





































special holiday

Gift Giving Time




helpful hints if








the present for him




opening presents











home



gift













her









the next day
























2013Calendar

ofANGELS


continuedhellip









Special Tips for

Travelling Families


Records







Medical Equipment















claim





or checked in





















Call the TSA




call 1-855-787-2227 prior to






















Small Bills






helping you out

Check-In at Home





yourself the hassle

Have a backup plan












next












syndrome



country



FAMILY MEETINGS







or legal issues




Angelman Syndrome

















MAIN ACTIVITIES










research





































We were warmly wel-














our NZ families






We aim to





Syndrome

















world wide





2014





Kiwis in Sydney

Connecting Families


The Global Picture

Where to nowhellip


Kiwis in Sydney











































Kiwi-mums meet-up




Greetings Angleman

community and all

the readers of


would like to thank

Liz Sordia for

stepping out and

showing leadership

by creating this



find ways to meet

our challenges that

will maximize our


the opportunity to

share with you the

experience of the

moment I and my


had Angelman

syndrome




Tristan age eight




remarkable













day










California









December















injuries













remain on oxygen




















developed







































fine













stood straight up












frame










dragon































amazing gift






























their families








research and trials















procedures

Happy Holidays from

Angelman Today









































tour brusquement
















ses maicirctres





problems



























better )



























Foundation




































QampA session


Date


Location


Events




Sponsorship








Costs




clicking here






venue

















Form








wwwangelmantodaycom

Connect with us on











something is wrong




indicates


good doctor says




baby








doctor pleaserdquo


















he was a child






Words Of

Wisdom





















quality of life








Angelman Syndrome






















Pediatrician








abnormalitiesrdquo

































































Tampa FL 33618

Tel 813-960-3415





wwwmedmapsorg



becausehellip








related disorders





The Medical Academy



Irvine CA 92618


Tel 3072131400

Fax 3072131401






wwwtherasurforg

Epilepsy Awareness


Did you know



For more info visit


The Most

Gift Guide




Finger paint

gift - set

Water Table


Apple iPad


Wooden Bead Maze

Nabi


Click images

amp shop

Amazon


















born







that















and girls











customer feedback




















toddlers










Angelman Syndrome














bonus toordquo



Products We Like

Recipe




minutes




















Rand

all M

iche

lson

Pho

togr

aphy










this holiday season


expectations





















gathering






































































Augment the menu
















things in our lives




Remain calm






















home

No martyrs here





















pretty good goal





































special holiday

Gift Giving Time




helpful hints if








the present for him




opening presents











home



gift













her









the next day
























2013Calendar

ofANGELS


continuedhellip









Special Tips for

Travelling Families


Records







Medical Equipment















claim





or checked in





















Call the TSA




call 1-855-787-2227 prior to






















Small Bills






helping you out

Check-In at Home





yourself the hassle

Have a backup plan












next












syndrome



country



FAMILY MEETINGS







or legal issues




Angelman Syndrome

















MAIN ACTIVITIES










research





































We were warmly wel-














our NZ families






We aim to





Syndrome

















world wide





2014





Kiwis in Sydney

Connecting Families


The Global Picture

Where to nowhellip


Kiwis in Sydney











































Kiwi-mums meet-up




Greetings Angleman

community and all

the readers of


would like to thank

Liz Sordia for

stepping out and

showing leadership

by creating this



find ways to meet

our challenges that

will maximize our


the opportunity to

share with you the

experience of the

moment I and my


had Angelman

syndrome




Tristan age eight




remarkable













day










California









December















injuries













remain on oxygen




















developed







































fine













stood straight up












frame










dragon































amazing gift






























their families








research and trials















procedures

Happy Holidays from

Angelman Today









































tour brusquement
















ses maicirctres





problems



























better )



























Foundation




































QampA session


Date


Location


Events




Sponsorship








Costs




clicking here






venue

















Form








wwwangelmantodaycom

Connect with us on




















quality of life








Angelman Syndrome






















Pediatrician








abnormalitiesrdquo

































































Tampa FL 33618

Tel 813-960-3415





wwwmedmapsorg



becausehellip








related disorders





The Medical Academy



Irvine CA 92618


Tel 3072131400

Fax 3072131401






wwwtherasurforg

Epilepsy Awareness


Did you know



For more info visit


The Most

Gift Guide




Finger paint

gift - set

Water Table


Apple iPad


Wooden Bead Maze

Nabi


Click images

amp shop

Amazon


















born







that















and girls











customer feedback




















toddlers










Angelman Syndrome














bonus toordquo



Products We Like

Recipe




minutes




















Rand

all M

iche

lson

Pho

togr

aphy










this holiday season


expectations





















gathering






































































Augment the menu
















things in our lives




Remain calm






















home

No martyrs here





















pretty good goal





































special holiday

Gift Giving Time




helpful hints if








the present for him




opening presents











home



gift













her









the next day
























2013Calendar

ofANGELS


continuedhellip









Special Tips for

Travelling Families


Records







Medical Equipment















claim





or checked in





















Call the TSA




call 1-855-787-2227 prior to






















Small Bills






helping you out

Check-In at Home





yourself the hassle

Have a backup plan












next












syndrome



country



FAMILY MEETINGS







or legal issues




Angelman Syndrome

















MAIN ACTIVITIES










research





































We were warmly wel-














our NZ families






We aim to





Syndrome

















world wide





2014





Kiwis in Sydney

Connecting Families


The Global Picture

Where to nowhellip


Kiwis in Sydney











































Kiwi-mums meet-up




Greetings Angleman

community and all

the readers of


would like to thank

Liz Sordia for

stepping out and

showing leadership

by creating this



find ways to meet

our challenges that

will maximize our


the opportunity to

share with you the

experience of the

moment I and my


had Angelman

syndrome




Tristan age eight




remarkable













day










California









December















injuries













remain on oxygen




















developed







































fine













stood straight up












frame










dragon































amazing gift






























their families








research and trials















procedures

Happy Holidays from

Angelman Today









































tour brusquement
















ses maicirctres





problems



























better )



























Foundation




































QampA session


Date


Location


Events




Sponsorship








Costs




clicking here






venue

















Form








wwwangelmantodaycom

Connect with us on













































Tampa FL 33618

Tel 813-960-3415





wwwmedmapsorg



becausehellip








related disorders





The Medical Academy



Irvine CA 92618


Tel 3072131400

Fax 3072131401






wwwtherasurforg

Epilepsy Awareness


Did you know



For more info visit


The Most

Gift Guide




Finger paint

gift - set

Water Table


Apple iPad


Wooden Bead Maze

Nabi


Click images

amp shop

Amazon


















born







that















and girls











customer feedback




















toddlers










Angelman Syndrome














bonus toordquo



Products We Like

Recipe




minutes




















Rand

all M

iche

lson

Pho

togr

aphy










this holiday season


expectations





















gathering






































































Augment the menu
















things in our lives




Remain calm






















home

No martyrs here





















pretty good goal





































special holiday

Gift Giving Time




helpful hints if








the present for him




opening presents











home



gift













her









the next day
























2013Calendar

ofANGELS


continuedhellip









Special Tips for

Travelling Families


Records







Medical Equipment















claim





or checked in





















Call the TSA




call 1-855-787-2227 prior to






















Small Bills






helping you out

Check-In at Home





yourself the hassle

Have a backup plan












next












syndrome



country



FAMILY MEETINGS







or legal issues




Angelman Syndrome

















MAIN ACTIVITIES










research





































We were warmly wel-














our NZ families






We aim to





Syndrome

















world wide





2014





Kiwis in Sydney

Connecting Families


The Global Picture

Where to nowhellip


Kiwis in Sydney











































Kiwi-mums meet-up




Greetings Angleman

community and all

the readers of


would like to thank

Liz Sordia for

stepping out and

showing leadership

by creating this



find ways to meet

our challenges that

will maximize our


the opportunity to

share with you the

experience of the

moment I and my


had Angelman

syndrome




Tristan age eight




remarkable













day










California









December















injuries













remain on oxygen




















developed







































fine













stood straight up












frame










dragon































amazing gift






























their families








research and trials















procedures

Happy Holidays from

Angelman Today









































tour brusquement
















ses maicirctres





problems



























better )



























Foundation




































QampA session


Date


Location


Events




Sponsorship








Costs




clicking here






venue

















Form








wwwangelmantodaycom

Connect with us on





wwwtherasurforg

Epilepsy Awareness


Did you know



For more info visit


The Most

Gift Guide




Finger paint

gift - set

Water Table


Apple iPad


Wooden Bead Maze

Nabi


Click images

amp shop

Amazon


















born







that















and girls











customer feedback




















toddlers










Angelman Syndrome














bonus toordquo



Products We Like

Recipe




minutes




















Rand

all M

iche

lson

Pho

togr

aphy










this holiday season


expectations





















gathering






































































Augment the menu
















things in our lives




Remain calm






















home

No martyrs here





















pretty good goal





































special holiday

Gift Giving Time




helpful hints if








the present for him




opening presents











home



gift













her









the next day
























2013Calendar

ofANGELS


continuedhellip









Special Tips for

Travelling Families


Records







Medical Equipment















claim





or checked in





















Call the TSA




call 1-855-787-2227 prior to






















Small Bills






helping you out

Check-In at Home





yourself the hassle

Have a backup plan












next












syndrome



country



FAMILY MEETINGS







or legal issues




Angelman Syndrome

















MAIN ACTIVITIES










research





































We were warmly wel-














our NZ families






We aim to





Syndrome

















world wide





2014





Kiwis in Sydney

Connecting Families


The Global Picture

Where to nowhellip


Kiwis in Sydney











































Kiwi-mums meet-up




Greetings Angleman

community and all

the readers of


would like to thank

Liz Sordia for

stepping out and

showing leadership

by creating this



find ways to meet

our challenges that

will maximize our


the opportunity to

share with you the

experience of the

moment I and my


had Angelman

syndrome




Tristan age eight




remarkable













day










California









December















injuries













remain on oxygen




















developed







































fine













stood straight up












frame










dragon































amazing gift






























their families








research and trials















procedures

Happy Holidays from

Angelman Today









































tour brusquement
















ses maicirctres





problems



























better )



























Foundation




































QampA session


Date


Location


Events




Sponsorship








Costs




clicking here






venue

















Form








wwwangelmantodaycom

Connect with us on

Epilepsy Awareness


Did you know



For more info visit


The Most

Gift Guide




Finger paint

gift - set

Water Table


Apple iPad


Wooden Bead Maze

Nabi


Click images

amp shop

Amazon


















born







that















and girls











customer feedback




















toddlers










Angelman Syndrome














bonus toordquo



Products We Like

Recipe




minutes




















Rand

all M

iche

lson

Pho

togr

aphy










this holiday season


expectations





















gathering






































































Augment the menu
















things in our lives




Remain calm






















home

No martyrs here





















pretty good goal





































special holiday

Gift Giving Time




helpful hints if








the present for him




opening presents











home



gift













her









the next day
























2013Calendar

ofANGELS


continuedhellip









Special Tips for

Travelling Families


Records







Medical Equipment















claim





or checked in





















Call the TSA




call 1-855-787-2227 prior to






















Small Bills






helping you out

Check-In at Home





yourself the hassle

Have a backup plan












next












syndrome



country



FAMILY MEETINGS







or legal issues




Angelman Syndrome

















MAIN ACTIVITIES










research





































We were warmly wel-














our NZ families






We aim to





Syndrome

















world wide





2014





Kiwis in Sydney

Connecting Families


The Global Picture

Where to nowhellip


Kiwis in Sydney











































Kiwi-mums meet-up




Greetings Angleman

community and all

the readers of


would like to thank

Liz Sordia for

stepping out and

showing leadership

by creating this



find ways to meet

our challenges that

will maximize our


the opportunity to

share with you the

experience of the

moment I and my


had Angelman

syndrome




Tristan age eight




remarkable













day










California









December















injuries













remain on oxygen




















developed







































fine













stood straight up












frame










dragon































amazing gift






























their families








research and trials















procedures

Happy Holidays from

Angelman Today









































tour brusquement
















ses maicirctres





problems



























better )



























Foundation




































QampA session


Date


Location


Events




Sponsorship








Costs




clicking here






venue

















Form








wwwangelmantodaycom

Connect with us on

The Most

Gift Guide




Finger paint

gift - set

Water Table


Apple iPad


Wooden Bead Maze

Nabi


Click images

amp shop

Amazon


















born







that















and girls











customer feedback




















toddlers










Angelman Syndrome














bonus toordquo



Products We Like

Recipe




minutes




















Rand

all M

iche

lson

Pho

togr

aphy










this holiday season


expectations





















gathering






































































Augment the menu
















things in our lives




Remain calm






















home

No martyrs here





















pretty good goal





































special holiday

Gift Giving Time




helpful hints if








the present for him




opening presents











home



gift













her









the next day
























2013Calendar

ofANGELS


continuedhellip









Special Tips for

Travelling Families


Records







Medical Equipment















claim





or checked in





















Call the TSA




call 1-855-787-2227 prior to






















Small Bills






helping you out

Check-In at Home





yourself the hassle

Have a backup plan












next












syndrome



country



FAMILY MEETINGS







or legal issues




Angelman Syndrome

















MAIN ACTIVITIES










research





































We were warmly wel-














our NZ families






We aim to





Syndrome

















world wide





2014





Kiwis in Sydney

Connecting Families


The Global Picture

Where to nowhellip


Kiwis in Sydney











































Kiwi-mums meet-up




Greetings Angleman

community and all

the readers of


would like to thank

Liz Sordia for

stepping out and

showing leadership

by creating this



find ways to meet

our challenges that

will maximize our


the opportunity to

share with you the

experience of the

moment I and my


had Angelman

syndrome




Tristan age eight




remarkable













day










California









December















injuries













remain on oxygen




















developed







































fine













stood straight up












frame










dragon































amazing gift






























their families








research and trials















procedures

Happy Holidays from

Angelman Today









































tour brusquement
















ses maicirctres





problems



























better )



























Foundation




































QampA session


Date


Location


Events




Sponsorship








Costs




clicking here






venue

















Form








wwwangelmantodaycom

Connect with us on


















born







that















and girls











customer feedback




















toddlers










Angelman Syndrome














bonus toordquo



Products We Like

Recipe




minutes




















Rand

all M

iche

lson

Pho

togr

aphy










this holiday season


expectations





















gathering






































































Augment the menu
















things in our lives




Remain calm






















home

No martyrs here





















pretty good goal





































special holiday

Gift Giving Time




helpful hints if








the present for him




opening presents











home



gift













her









the next day
























2013Calendar

ofANGELS


continuedhellip









Special Tips for

Travelling Families


Records







Medical Equipment















claim





or checked in





















Call the TSA




call 1-855-787-2227 prior to






















Small Bills






helping you out

Check-In at Home





yourself the hassle

Have a backup plan












next












syndrome



country



FAMILY MEETINGS







or legal issues




Angelman Syndrome

















MAIN ACTIVITIES










research





































We were warmly wel-














our NZ families






We aim to





Syndrome

















world wide





2014





Kiwis in Sydney

Connecting Families


The Global Picture

Where to nowhellip


Kiwis in Sydney











































Kiwi-mums meet-up




Greetings Angleman

community and all

the readers of


would like to thank

Liz Sordia for

stepping out and

showing leadership

by creating this



find ways to meet

our challenges that

will maximize our


the opportunity to

share with you the

experience of the

moment I and my


had Angelman

syndrome




Tristan age eight




remarkable













day










California









December















injuries













remain on oxygen




















developed







































fine













stood straight up












frame










dragon































amazing gift






























their families








research and trials















procedures

Happy Holidays from

Angelman Today









































tour brusquement
















ses maicirctres





problems



























better )



























Foundation




































QampA session


Date


Location


Events




Sponsorship








Costs




clicking here






venue

















Form








wwwangelmantodaycom

Connect with us on

Products We Like

Recipe




minutes




















Rand

all M

iche

lson

Pho

togr

aphy










this holiday season


expectations





















gathering






































































Augment the menu
















things in our lives




Remain calm






















home

No martyrs here





















pretty good goal





































special holiday

Gift Giving Time




helpful hints if








the present for him




opening presents











home



gift













her









the next day
























2013Calendar

ofANGELS


continuedhellip









Special Tips for

Travelling Families


Records







Medical Equipment















claim





or checked in





















Call the TSA




call 1-855-787-2227 prior to






















Small Bills






helping you out

Check-In at Home





yourself the hassle

Have a backup plan












next












syndrome



country



FAMILY MEETINGS







or legal issues




Angelman Syndrome

















MAIN ACTIVITIES










research





































We were warmly wel-














our NZ families






We aim to





Syndrome

















world wide





2014





Kiwis in Sydney

Connecting Families


The Global Picture

Where to nowhellip


Kiwis in Sydney











































Kiwi-mums meet-up




Greetings Angleman

community and all

the readers of


would like to thank

Liz Sordia for

stepping out and

showing leadership

by creating this



find ways to meet

our challenges that

will maximize our


the opportunity to

share with you the

experience of the

moment I and my


had Angelman

syndrome




Tristan age eight




remarkable













day










California









December















injuries













remain on oxygen




















developed







































fine













stood straight up












frame










dragon































amazing gift






























their families








research and trials















procedures

Happy Holidays from

Angelman Today









































tour brusquement
















ses maicirctres





problems



























better )



























Foundation




































QampA session


Date


Location


Events




Sponsorship








Costs




clicking here






venue

















Form








wwwangelmantodaycom

Connect with us on

Recipe




minutes




















Rand

all M

iche

lson

Pho

togr

aphy










this holiday season


expectations





















gathering






































































Augment the menu
















things in our lives




Remain calm






















home

No martyrs here





















pretty good goal





































special holiday

Gift Giving Time




helpful hints if








the present for him




opening presents











home



gift













her









the next day
























2013Calendar

ofANGELS


continuedhellip









Special Tips for

Travelling Families


Records







Medical Equipment















claim





or checked in





















Call the TSA




call 1-855-787-2227 prior to






















Small Bills






helping you out

Check-In at Home





yourself the hassle

Have a backup plan












next












syndrome



country



FAMILY MEETINGS







or legal issues




Angelman Syndrome

















MAIN ACTIVITIES










research





































We were warmly wel-














our NZ families






We aim to





Syndrome

















world wide





2014





Kiwis in Sydney

Connecting Families


The Global Picture

Where to nowhellip


Kiwis in Sydney











































Kiwi-mums meet-up




Greetings Angleman

community and all

the readers of


would like to thank

Liz Sordia for

stepping out and

showing leadership

by creating this



find ways to meet

our challenges that

will maximize our


the opportunity to

share with you the

experience of the

moment I and my


had Angelman

syndrome




Tristan age eight




remarkable













day










California









December















injuries













remain on oxygen




















developed







































fine













stood straight up












frame










dragon































amazing gift






























their families








research and trials















procedures

Happy Holidays from

Angelman Today









































tour brusquement
















ses maicirctres





problems



























better )



























Foundation




































QampA session


Date


Location


Events




Sponsorship








Costs




clicking here






venue

















Form








wwwangelmantodaycom

Connect with us on















Rand

all M

iche

lson

Pho

togr

aphy










this holiday season


expectations





















gathering






































































Augment the menu
















things in our lives




Remain calm






















home

No martyrs here





















pretty good goal





































special holiday

Gift Giving Time




helpful hints if








the present for him




opening presents











home



gift













her









the next day
























2013Calendar

ofANGELS


continuedhellip









Special Tips for

Travelling Families


Records







Medical Equipment















claim





or checked in





















Call the TSA




call 1-855-787-2227 prior to






















Small Bills






helping you out

Check-In at Home





yourself the hassle

Have a backup plan












next












syndrome



country



FAMILY MEETINGS







or legal issues




Angelman Syndrome

















MAIN ACTIVITIES










research





































We were warmly wel-














our NZ families






We aim to





Syndrome

















world wide





2014





Kiwis in Sydney

Connecting Families


The Global Picture

Where to nowhellip


Kiwis in Sydney











































Kiwi-mums meet-up




Greetings Angleman

community and all

the readers of


would like to thank

Liz Sordia for

stepping out and

showing leadership

by creating this



find ways to meet

our challenges that

will maximize our


the opportunity to

share with you the

experience of the

moment I and my


had Angelman

syndrome




Tristan age eight




remarkable













day










California









December















injuries













remain on oxygen




















developed







































fine













stood straight up












frame










dragon































amazing gift






























their families








research and trials















procedures

Happy Holidays from

Angelman Today









































tour brusquement
















ses maicirctres





problems



























better )



























Foundation




































QampA session


Date


Location


Events




Sponsorship








Costs




clicking here






venue

















Form








wwwangelmantodaycom

Connect with us on










this holiday season


expectations





















gathering






































































Augment the menu
















things in our lives




Remain calm






















home

No martyrs here





















pretty good goal





































special holiday

Gift Giving Time




helpful hints if








the present for him




opening presents











home



gift













her









the next day
























2013Calendar

ofANGELS


continuedhellip









Special Tips for

Travelling Families


Records







Medical Equipment















claim





or checked in





















Call the TSA




call 1-855-787-2227 prior to






















Small Bills






helping you out

Check-In at Home





yourself the hassle

Have a backup plan












next












syndrome



country



FAMILY MEETINGS







or legal issues




Angelman Syndrome

















MAIN ACTIVITIES










research





































We were warmly wel-














our NZ families






We aim to





Syndrome

















world wide





2014





Kiwis in Sydney

Connecting Families


The Global Picture

Where to nowhellip


Kiwis in Sydney











































Kiwi-mums meet-up




Greetings Angleman

community and all

the readers of


would like to thank

Liz Sordia for

stepping out and

showing leadership

by creating this



find ways to meet

our challenges that

will maximize our


the opportunity to

share with you the

experience of the

moment I and my


had Angelman

syndrome




Tristan age eight




remarkable













day










California









December















injuries













remain on oxygen




















developed







































fine













stood straight up












frame










dragon































amazing gift






























their families








research and trials















procedures

Happy Holidays from

Angelman Today









































tour brusquement
















ses maicirctres





problems



























better )



























Foundation




































QampA session


Date


Location


Events




Sponsorship








Costs




clicking here






venue

















Form








wwwangelmantodaycom

Connect with us on

Remain calm






















home

No martyrs here





















pretty good goal





































special holiday

Gift Giving Time




helpful hints if








the present for him




opening presents











home



gift













her









the next day
























2013Calendar

ofANGELS


continuedhellip









Special Tips for

Travelling Families


Records







Medical Equipment















claim





or checked in





















Call the TSA




call 1-855-787-2227 prior to






















Small Bills






helping you out

Check-In at Home





yourself the hassle

Have a backup plan












next












syndrome



country



FAMILY MEETINGS







or legal issues




Angelman Syndrome

















MAIN ACTIVITIES










research





































We were warmly wel-














our NZ families






We aim to





Syndrome

















world wide





2014





Kiwis in Sydney

Connecting Families


The Global Picture

Where to nowhellip


Kiwis in Sydney











































Kiwi-mums meet-up




Greetings Angleman

community and all

the readers of


would like to thank

Liz Sordia for

stepping out and

showing leadership

by creating this



find ways to meet

our challenges that

will maximize our


the opportunity to

share with you the

experience of the

moment I and my


had Angelman

syndrome




Tristan age eight




remarkable













day










California









December















injuries













remain on oxygen




















developed







































fine













stood straight up












frame










dragon































amazing gift






























their families








research and trials















procedures

Happy Holidays from

Angelman Today









































tour brusquement
















ses maicirctres





problems



























better )



























Foundation




































QampA session


Date


Location


Events




Sponsorship








Costs




clicking here






venue

















Form








wwwangelmantodaycom

Connect with us on













2013Calendar

ofANGELS


continuedhellip









Special Tips for

Travelling Families


Records







Medical Equipment















claim





or checked in





















Call the TSA




call 1-855-787-2227 prior to






















Small Bills






helping you out

Check-In at Home





yourself the hassle

Have a backup plan












next












syndrome



country



FAMILY MEETINGS







or legal issues




Angelman Syndrome

















MAIN ACTIVITIES










research





































We were warmly wel-














our NZ families






We aim to





Syndrome

















world wide





2014





Kiwis in Sydney

Connecting Families


The Global Picture

Where to nowhellip


Kiwis in Sydney











































Kiwi-mums meet-up




Greetings Angleman

community and all

the readers of


would like to thank

Liz Sordia for

stepping out and

showing leadership

by creating this



find ways to meet

our challenges that

will maximize our


the opportunity to

share with you the

experience of the

moment I and my


had Angelman

syndrome




Tristan age eight




remarkable













day










California









December















injuries













remain on oxygen




















developed







































fine













stood straight up












frame










dragon































amazing gift






























their families








research and trials















procedures

Happy Holidays from

Angelman Today









































tour brusquement
















ses maicirctres





problems



























better )



























Foundation




































QampA session


Date


Location


Events




Sponsorship








Costs




clicking here






venue

















Form








wwwangelmantodaycom

Connect with us on


continuedhellip









Special Tips for

Travelling Families


Records







Medical Equipment















claim





or checked in





















Call the TSA




call 1-855-787-2227 prior to






















Small Bills






helping you out

Check-In at Home





yourself the hassle

Have a backup plan












next












syndrome



country



FAMILY MEETINGS







or legal issues




Angelman Syndrome

















MAIN ACTIVITIES










research





































We were warmly wel-














our NZ families






We aim to





Syndrome

















world wide





2014





Kiwis in Sydney

Connecting Families


The Global Picture

Where to nowhellip


Kiwis in Sydney











































Kiwi-mums meet-up




Greetings Angleman

community and all

the readers of


would like to thank

Liz Sordia for

stepping out and

showing leadership

by creating this



find ways to meet

our challenges that

will maximize our


the opportunity to

share with you the

experience of the

moment I and my


had Angelman

syndrome




Tristan age eight




remarkable













day










California









December















injuries













remain on oxygen




















developed







































fine













stood straight up












frame










dragon































amazing gift






























their families








research and trials















procedures

Happy Holidays from

Angelman Today









































tour brusquement
















ses maicirctres





problems



























better )



























Foundation




































QampA session


Date


Location


Events




Sponsorship








Costs




clicking here






venue

















Form








wwwangelmantodaycom

Connect with us on






syndrome



country



FAMILY MEETINGS







or legal issues




Angelman Syndrome

















MAIN ACTIVITIES










research





































We were warmly wel-














our NZ families






We aim to





Syndrome

















world wide





2014





Kiwis in Sydney

Connecting Families


The Global Picture

Where to nowhellip


Kiwis in Sydney











































Kiwi-mums meet-up




Greetings Angleman

community and all

the readers of


would like to thank

Liz Sordia for

stepping out and

showing leadership

by creating this



find ways to meet

our challenges that

will maximize our


the opportunity to

share with you the

experience of the

moment I and my


had Angelman

syndrome




Tristan age eight




remarkable













day










California









December















injuries













remain on oxygen




















developed







































fine













stood straight up












frame










dragon































amazing gift






























their families








research and trials















procedures

Happy Holidays from

Angelman Today









































tour brusquement
















ses maicirctres





problems



























better )



























Foundation




































QampA session


Date


Location


Events




Sponsorship








Costs




clicking here






venue

















Form








wwwangelmantodaycom

Connect with us on


MAIN ACTIVITIES










research





































We were warmly wel-














our NZ families






We aim to





Syndrome

















world wide





2014





Kiwis in Sydney

Connecting Families


The Global Picture

Where to nowhellip


Kiwis in Sydney











































Kiwi-mums meet-up




Greetings Angleman

community and all

the readers of


would like to thank

Liz Sordia for

stepping out and

showing leadership

by creating this



find ways to meet

our challenges that

will maximize our


the opportunity to

share with you the

experience of the

moment I and my


had Angelman

syndrome




Tristan age eight




remarkable













day










California









December















injuries













remain on oxygen




















developed







































fine













stood straight up












frame










dragon































amazing gift






























their families








research and trials















procedures

Happy Holidays from

Angelman Today









































tour brusquement
















ses maicirctres





problems



























better )



























Foundation




































QampA session


Date


Location


Events




Sponsorship








Costs




clicking here






venue

















Form








wwwangelmantodaycom

Connect with us on

We were warmly wel-














our NZ families






We aim to





Syndrome

















world wide





2014





Kiwis in Sydney

Connecting Families


The Global Picture

Where to nowhellip


Kiwis in Sydney











































Kiwi-mums meet-up




Greetings Angleman

community and all

the readers of


would like to thank

Liz Sordia for

stepping out and

showing leadership

by creating this



find ways to meet

our challenges that

will maximize our


the opportunity to

share with you the

experience of the

moment I and my


had Angelman

syndrome




Tristan age eight




remarkable













day










California









December















injuries













remain on oxygen




















developed







































fine













stood straight up












frame










dragon































amazing gift






























their families








research and trials















procedures

Happy Holidays from

Angelman Today









































tour brusquement
















ses maicirctres





problems



























better )



























Foundation




































QampA session


Date


Location


Events




Sponsorship








Costs




clicking here






venue

















Form








wwwangelmantodaycom

Connect with us on

Greetings Angleman

community and all

the readers of


would like to thank

Liz Sordia for

stepping out and

showing leadership

by creating this



find ways to meet

our challenges that

will maximize our


the opportunity to

share with you the

experience of the

moment I and my


had Angelman

syndrome




Tristan age eight




remarkable













day










California









December















injuries













remain on oxygen




















developed







































fine













stood straight up












frame










dragon































amazing gift






























their families








research and trials















procedures

Happy Holidays from

Angelman Today









































tour brusquement
















ses maicirctres





problems



























better )



























Foundation




































QampA session


Date


Location


Events




Sponsorship








Costs




clicking here






venue

















Form








wwwangelmantodaycom

Connect with us on











developed







































fine













stood straight up












frame










dragon































amazing gift






























their families








research and trials















procedures

Happy Holidays from

Angelman Today









































tour brusquement
















ses maicirctres





problems



























better )



























Foundation




































QampA session


Date


Location


Events




Sponsorship








Costs




clicking here






venue

















Form








wwwangelmantodaycom

Connect with us on






their families








research and trials















procedures

Happy Holidays from

Angelman Today









































tour brusquement
















ses maicirctres





problems



























better )



























Foundation




































QampA session


Date


Location


Events




Sponsorship








Costs




clicking here






venue

















Form








wwwangelmantodaycom

Connect with us on

Happy Holidays from

Angelman Today









































tour brusquement
















ses maicirctres





problems



























better )



























Foundation




































QampA session


Date


Location


Events




Sponsorship








Costs




clicking here






venue

















Form








wwwangelmantodaycom

Connect with us on









































tour brusquement
















ses maicirctres





problems



























better )



























Foundation




































QampA session


Date


Location


Events




Sponsorship








Costs




clicking here






venue

















Form








wwwangelmantodaycom

Connect with us on

problems



























better )



























Foundation




































QampA session


Date


Location


Events




Sponsorship








Costs




clicking here






venue

















Form








wwwangelmantodaycom

Connect with us on




























QampA session


Date


Location


Events




Sponsorship








Costs




clicking here






venue

















Form








wwwangelmantodaycom

Connect with us on

Sponsorship








Costs




clicking here






venue

















Form








wwwangelmantodaycom

Connect with us on



wwwangelmantodaycom

Connect with us on

angelman today november - december edition 2013

Documents

support angelman

casa angelman argentina

angelman network new

healthy holiday season

managing holiday stress

special holiday edition

close friends

friends of people